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BOSTON 

PUBLIC 

UBRARY 


FEDERAL  RESPONSE  TO  AIDS 


HEARINGS 

BEFORE  A 

SUBCOMMITTEE  OF  THE 

COMMITTEB  ON 

GOVERNMENT  OPERATIONS 

HOUSE  OF  REPRESENTATIVES 

NINETY-EIGHTH  CONGRESS 

FIRST  SESSION 


AUGUST  1  AND  2,  1983 


T 


Printed  for  the  use  of  the  Committee  on  Government  Operations 


FEDERAL  RESPONSE  TO  AIDS 


At^w^iW  <jTciMa  ' 


HEARINGS 

BEFORE  A 

SUBCOMMITTEE  OF  THE 

COMMITTEE  ON 

GOVERNMENT  OPERATIONS 

HOUSE  OF  REPRESENTATIVES 

NINETY-EIGHTH  CONGRESS 

FIRST  SESSION 


AUGUST  1  AND  2,  1983 


Printed  for  the  use  of  the  Committee  on  Government  Operations 


U.S.   GOVERNMENT   PRINTING   OFFICE 
26-097  O  WASHINGTON   :  1983 


COMMITTEE  ON  GOVERNMENT  OPERATIONS 
JACK  BROOKS,  Texas,  Chairman 


DANTE  B.  FASCELL,  Florida 
DON  FUQUA,  Florida 
JOHN  CONYERS,  Jr.,  Michigan 
CARDISS  COLLINS,  Illinois 
GLENN  ENGLISH,  Oklahoma 
ELLIOTT  H.  LEVITAS,  Georgia 
HENRY  A.  WAXMAN,  California 
TED  WEISS,  New  York 
MIKE  SYNAR,  Oklahoma 
STEPHEN  L.  NEAL,  North  Carolina 
DOUG  BARNARD,  Jr.,  Georgia 
BARNEY  FRANK,  Massachusetts 
TOM  LANTOS,  California 
RONALD  D.  COLEMAN,  Texas 
ROBERT  E.  WISE,  Jr.,  West  Virginia 
BARBARA  BOXER,  California 
SANDER  M.  LEVIN,  Michigan 
BUDDY  MacKAY,  Florida 
MEL  LEVINE,  California 
MAJOR  R.  OWENS,  New  York 
EDOLPHUS  TOWNS,  New  York 
JOHN  M.  SPRATT,  Jr.,  South  Carolina 
JOE  KOLTER,  Pennsylvania 
BEN  ERDREICH,  Alabama 

William  M.  Jones,  General  Counsel 

John  E.  Moore,  Staff  Administrator 

John  M.  Duncan,  Minority  Staff  Director 


FRANK  HORTON,  New  York 

JOHN  N.  ERLENBORN,  Illinois 

THOMAS  N.  KINDNESS,  Ohio 

ROBERT  S.  WALKER,  Pennsylvania 

LYLE  WILLIAMS,  Ohio 

WILLIAM  F.  CLINGER,  Jr.,  Pennsylvania 

RAYMOND  J.  McGRATH,  New  York 

JUDD  GREGG,  New  Hampshire 

DAN  BURTON,  Indiana 

JOHN  R.  McKERNAN,  Jr.,  Maine 

TOM  LEWIS,  Florida 

ALFRED  A.  (AL)  McCANDLESS,  California 

LARRY  E.  CRAIG,  Idaho 

DAN  SCHAEFER,  Colorado 


Intergovernmental  Relations  and  Human  Resources  Subcommittee 

TED  WEISS,  New  York,  Chairman 
JOHN  CONYERS,  Jr.,  Michigan  ROBERT  S.  WALKER,  Pennsylvania 

SANDER  M.  LEVIN,  Michigan  ALFRED  A.  (AL)  McCANDLESS,  California 

BUDDY  MacKAY,  Florida  LARRY  E.  CRAIG,  Idaho 

EDOLPHUS  TOWNS,  New  York 
BEN  ERDREICH,  Alabama 


JACK  BROOKS,  Texas 


Ex  Officio 

FRANK  HORTON,  New  York 
James  R.  Gottueb,  Staff  Director 
Susan  Steinmetz,  Professional  Staff  Member 
Gwendolyn  S.  Black,  Secretary 


(II) 


CONTENTS 


Hearings  held  on —  Page 

August  1 1 

August  2 255 

Statement  of — 

Apuzzo,  Virginia  M.,  executive  director,  National  Gay  Task  Force 17 

Bove,  Dr.  Joseph  R.,  professor  of  laboratory  medicine,  Yale  University 

School  of  Medicine,  and  director,  blood  bank,  Yale-New  Haven  Hospital  162 
Brandt,  Dr.  Edward,  Assistant  Secretary  for  Health,  Department  of 
Health  and  Human  Services,  accompanied  by  Dr.  William  Foege,  Direc- 
tor, Centers  for  Disease  Control;  Dr.  Jane  Henney,  Deputy  Director, 
National  Cancer  Institute;  Dr.  Anthony  Fauci,  Deputy  Clinical  Director 
of  Intramural  Research,  National  Institute  of  Allergy  and  Infectious 
Diseases;  Dr.  Amoz  Chernoff,  Director,  Division  of  Blood  Diseases  and 
Resources,  National  Heart,  Lung,  and  Blood  Institute;  Dr.  Gerald  Quin- 
nan,  Director,  Division  of  Virology,  Office  of  Biologies,  Food  and  Drug 
Administration;  and  Thomas  Donnelly,  Assistant  Secretary  for  Legisla- 
tion, Department  of  Health  and  Human  Services 292 

Brownstein,  Alan  P.,  executive  director.  National  Hemophilia  Foundation         50 

Callen,  Michael,  New  York  City 5 

Collins,  Christopher  J.,  cooperating  attorney.  Lambda  Legal  Defense  and 

Education  Fund 206 

Compas,  Dr.  Jean-Claude,  vice  president,  Haitian  Medical  Association 

Abroad 41 

Conant,  Dr.  Marcus,  professor  of  dermatology.  University  of  California 

Medical  Center,  San  Francisco,  Calif 98 

Daire,   Harold   P.,   founder  and   director,   Oaklawn   Counseling  Center, 

Dallas  AIDS  Project,  Dallas,  Tex 191 

Endean,  Stephen  R.,  executive  director,  Gay  Rights  National  Lobby 38 

Ferrara,  Anthony,  Washington,  D.C 7 

Krim,  Dr.  Mathilde,  associate  member,  head  of  interferon  laboratory, 

Sloan-Kettering  Institute  for  Cancer  Research,  New  York,  N.Y 126 

Lyon,  Roger,  San  Francisco,  Calif 6 

Matek,  Stanley  J.,  immediate  past  president,  American  Public  Health 

Association 273 

Rosen,  Mel,  Gay  Men's  Health  Crisis,  New  York  City 177 

Sencer,  David  J.,  M.D.,  M.P.H.,  commissioner  of  health,  New  York  City, 

N.Y 258 

Siegal,  Dr.  Frederick  P.,  chief,  division  of  clinical  immunology.  Mount 

Sinai  School  of  Medicine  and  City  University  of  New  York 117 

Silverman,  Mervyn  F.,  M.D.,  M.P.H.,  director  of  health,  San  Francisco, 

Calif 270 

Voeller,   Dr.   Bruce,   president,   the  Mariposa  Education   and  Research 

Foundation 151 

Weiss,  Hon.  Ted,  a  Representative  in  Congress  from  the  State  of  New 
York,  and  chairman,  Intergovernmental  Relations  and  Human  Re- 
sources Subcommittee:  Opening  statement 1 

Letters,  statements,  etc.,  submitted  for  the  record  by — 

Apuzzo,  Virginia  M.,  executive  director,  National  Gay  Task  Force:  Pre- 
pared statement 22-37 

Bove,  Dr.  Joseph  R.,  professor  of  laboratory  medicine,  Yale  University 
School  of  Medicine,  and  director,  blood  bank,  Yale-New  Haven  Hospi- 
tal: Societal  and  medical  risks 165 

(HI) 


IV 

Letters,  statements,  etc.,  submitted  for  the  record  by Continued 

Brandt,    Dr.    Edward,   Assistant   Secretary   for   Health,   Department   of 
Health  and  Human  Services:  p 

Budget  figures  describing  support  for  science  base  research  related  to        "^ 

AIDS 470-472 

Centers  for  Disease  Control  budget  figures  by  year ^ 384 

Correspondence  concerning  current  research  efforts  on  AIDS 392-410 

Investigator  initiated  research  project  grants 481 

List  of  meetings  and  those  in  attendance ooa  qoc 

Prepared  statement ■■:".•■" 298-d-ib 

Brownstein,  Alan  P.,  executive  director.  National  Hemophilia  Founda- 
tion: „„ 

Information  concerning  research cq_ co 

Prepared  statement ,"V^' "A V  ^^""^ 

Collins,  Christopher  J.,  cooperating  attorney.  Lambda  Legal  Defense  and 

Education  Fund:  Prepared  statement 210-25Z 

Compas,  Dr.  Jean-Claude,  vice  president,  Haitian  Medical  Association 
Abroad:  ,, 

Papers  and  articles '^  ^^ 

Conant,  Dr.  Marcus,  professor  of  dermatology.  University  of  California 

Medical  Center,  San  Francisco,  Calif:  Prepared  statement 103-llb 

Daire,   Harold  P.,   founder   and   director,   Oaklawn   Counseling  Center, 

Dallas  AIDS  Project,  Dallas,  Tex.:  Prepared  statement 194-205 

Foege,  Dr.  William,  Director,  Centers  for  Disease  Control,  Department  of 
Health  and  Human  Services: 

Correspondence  between  subcommittee  and  departments dZo-dbi 

Memorandum  concerning  confidentiality  of  AIDS  survsillance  data: 

Current  systems  for  collection  and  protection  of  data 3b5-d7d 

Krim,  Dr.  Mathilde,  associate  member,  head  of  interferon  laboratory, 
Sloan-Kettering  Institute  for  Cancer  Research,  New  York,  N.Y.:  Pre- 
pared statement  •;;-v:r-"u"i..i 

Matek,  Stanley  J.,  immediate  past  president,  American  Public  Health 
Association:  Prepared  statement 276-275 

Rosen,  Mel,  Gay  Men's  Health  Crisis,  New  York  City: 

Case  report  prepared  by  Dr.  Irving  Selikoff icoiqn 

Prepared  statement •■• ...........^..  lo-i-iyo 

Sencer,  David  J.,  M.D.,  M.P.H.,  commissioner  of  health,  New  York  City, 

N.Y.:  Attachments  to  statement ••••••••  2bl-270 

Siegal,  Dr.  Frederick  P.,  chief,  division  of  clinical  immunologj'.  Mount 
Sinai  School  of  Medicine  and  City  University  of  New  York:  December 
10,  1981,  article  from  the  New  England  Journal  of  Medicine  entitled 
"Severe  Acquired  Immunodeficiency  in  Male  Homosexuals,  Manifested 
by  Chronic  Perianal  Ulcerative  Herpes  Simplex  Lesions" 119-124 

Voeller,   Dr.   Bruce,   president,  the   Mariposa  Education  and  Research 

Foundation:  Prepared  statement lob-lbl 

APPENDIXES 

Appendix  1.— HHS  response  to  subcommittee  questions 487 

Appendix  2.— Material  submitted  for  the  record • o^l 


FEDERAL  RESPONSE  TO  AIDS 


MONDAY,  AUGUST  1,  1983 

House  of  Representatives, 
Intergovernmental  Relations 
AND  Human  Resources  Subcommittee 
OF  THE  Committee  on  Government  Operations, 

Washington,  D.C. 
The  subcommittee  met,  pursuant  to  notice,  at  10:05  a.m.,  in  room 
2154,  Rayburn  House  Office  Building,  Hon.  Ted  Weiss  (chairman  of 
the  subcommittee)  presiding. 

Present:  Representatives  Ted  Weiss,  Sander  M.  Levin,  Robert  S 
Walker,  Alfred  A.  (Al)  McCandless,  and  Larry  E.  Craig. 
Also  present:  Representative  Barbara  Boxer. 
Staff  present:  James  R.  Gottlieb,  staff  director;  Susan  Steinmetz, 
professional  staff  member;  James  F.  Michie,  chief  investigator; 
Gwendolyn  S.  Black,  secretary,  and  Hugh  Coffman,  minority  pro- 
fessional staff.  Committee  on  Government  Operations. 

OPENING  STATEMENT  OF  CHAIRMAN  WEISS 

Mr.  Weiss.  Good  morning. 

The  subcommittee  will  come  to  order. 

Let  the  record  show  that  a  quorum  was  present.  We  have  Mr. 
Walker,  who  is  the  ranking  minority  member  on  the  committee  to 
my  immediate  right,  Larry  Craig  at  the  end  of  the  table  on  my 
right,  and  Barbara  Boxer  on  my  immediate  left. 

I  would  like  to  begin  this  hearing  by  extending  my  appreciation 
to  the  many  witnesses  who  have  traveled  here  from  across  the 
country  to  express  their  concerns  about  acquired  immune  deficien- 
cy syndrome  [AIDS]  and  the  Federal  Government's  response  to  this 
public  health  emergency. 

The  AIDS  epidemic  continues  its  cruel  relentless  pace.  The  most 
recent  data  from  the  Centers  for  Disease  Control  reveals  almost 
2,000  reported  cases  and  730  fatalities  in  this  country  alone.  The 
number  of  cases  is  still  doubling  every  6  months.  The  young  age  of 
the  victims  and  the  debilitating  nature  of  the  disorder  deepens  the 
human  tragedy  of  AIDS.  And  there  is  little  sign  that  researchers 
are  close  to  unraveling  the  mystery  of  the  epidemic. 

For  far  too  long  our  collective  response,  societal  as  well  as  gov- 
ernniental,  to  the  crisis  was  haphazard  and  inexcusably  slow.  But 
within  the  last  few  months,  the  consensus  for  urgent  and  exhaus- 
tive action  has  solidified.  The  Federal  Government,  in  fulfilling  its 
duty  to  protect  the  Nation's  health  and  safety,  must  mobihze  its 
enormous  resources  to  meet  this  challenge  as  quickly  as  possible. 
Moreover,  Congress,  the  administration,  and  the  Public  Health 

(1) 


Service  must  act  aggressively  to  provide  care  and  compassion  to 
the  victims  with  respect  to  their  right  to  confidentiaUty. 

This  forum  will  enable  representatives  from  many  groups  in- 
volved with  AIDS  to  share  their  concerns  and  insights  about  the 
epidemic  with  Federal  officials.  At  the  same  time,  it  will  afford  the 
administration  an  opportunity  to  describe  its  activities  and  respond 
to  concerns  that  may  be  raised.  I  believe  that  such  an  exchange 
will  increase  Government  responsiveness  to  those  affected  by  its 
decisions.  In  this  situation,  the  quality  of  these  decisions  may  de- 
termine whether  people  live  or  die. 

As  part  of  this  subcommittee's  oversight  responsibilities,  we  have 
initiated  an  inquiry  into  the  Department  of  Health  and  Human 
Services'  efforts  to  extinguish  the  epidemic.  Unfortunately,  the  re- 
fusal of  the  Department  to  provide  full  access  to  its  staff  and 
records  has  seriously  hampered  our  oversight  work.  However, 
during  our  preliminary  inquiry,  many  issues  have  emerged  which 
will  be  addressed  during  these  hearings.  These  include: 

Are  adequate  resources  available  for  research,  treatment,  and 
prevention? 

How  comprehensive  are  the  research  and  surveillance  activities? 

Has  the  Government's  response  been  timely? 

What  is  the  extent  of  coordination  in  the  efforts  to  fight  the  epi- 
demic? 

What  is  the  scope  of  public  education  and  how  effective  is  it? 

How  accessible  is  health  care  for  persons  with  AIDS? 

Is  the  confidentiality  of  those  who  suffer  from  AIDS  being  pro- 
tected? 

In  the  course  of  our  preliminary  oversight  work,  CDC  has  sug- 
gested that  their  unwillingness  to  cooperate  with  this  subcommit- 
tee was  based  largely  on  confidentiality.  There  is  no  justification 
for  this  excuse  to  deny  Congress  complete  access  to  information  on 
the  agency's  AIDS  activities. 

I  want  to  make  it  unquestionably  clear,  as  I  have  to  the  Depart- 
ment, that  the  subcommittee  has  no  interest  or  intention  of  collect- 
ing names  or  other  identifying  information  regarding  individual 
patients.  There  is  serious  concern  whether  CDC  should  even  have 
this  information  as  long  as  there  are  alternative  procedures  in 
place  to  assure  adequate  research.  It  is  my  understanding  that 
CDC  is  in  the  process  of  developing  such  a  system  so  that  it  will  no 
longer  be  necessary  for  any  agency  at  the  Federal  level  to  maintain 
such  records. 

I  believe  that  there  is  a  strong  need  to  assure  that  the  confiden- 
tiality of  all  patients  and  research  participants  is  preserved,  and  I 
am  exploring  several  possible  legislative  remedies,  similar  to  the 
provisions  already  contained  in  the  Federal  law  to  protect  partici- 
pants in  drug  abuse  and  prevention  activities. 

The  growing  sense  of  national  emergency  that  has  catapulted 
AIDS  into  the  headlines  has  also  intensified  the  fight  against  the 
epidemic.  Unfortunately,  at  the  same  time  rumors  and  misconcep- 
tions have  unleashed  a  public  panic  that  diverts  attention  from  the 
real  needs.  The  epidemic  has  even  been  used  as  an  excuse  to 
malign  gays  and  Haitians  and  to  disregard  their  fundamental 
human  rights.  The  best  way  to  counter  the  hysteria  and  prejudice 
is  to  provide  the  public  with  accurate  and  timely  information.  I  am 


confident  that  this  hearing  will  help  disseminate  this  needed  infor- 
mation. 

Before  we  ask  our  first  set  of  witnesses  to  testify,  I  would  like  to 
ask  the  other  members,  starting  with  Mr.  Walker,  for  whatever 
opening  statements  they  would  care  to  make. 

Mr.  Walker.  Thank  you,  Mr.  Chairman. 

Mr.  Chairman,  acquired  immune  deficiency  syndrome,  commonly 
known  as  AIDS,  is  a  serious  public  health  problem.  Determined 
systematic  research,  accurate  communication  and  intense  coopera- 
tion between  Government,  private  citizens,  scientists,  and  commu- 
nity groups  will  be  necessary  to  insure  a  timely  resolution  of  the 
AIDS  threat. 

I  am  hopeful,  Mr.  Chairman,  that  during  the  next  2  days  of  hear- 
ings, we  can  help  focus  attention  on  what  has  been  done  to  discover 
the  cause  of  AIDS  and  what  can  be  done  to  eradicate  this  unfortu- 
nate condition.  It  is  important  that  we  strive  to  avoid  engaging  in 
hysteria  and  harangues  that  serve  only  to  scare  the  public. 

There  seems  to  have  been  a  tendency  to  speak  out  first  about 
AIDS  and  check  the  facts  later.  Jay  Winsten,  director  of  the  Office 
of  Health  Policy  Information  at  the  Harvard  School  of  Public 
Health,  has  written: 

"Public  health  information — and  misinformation — has  a  power- 
ful effect  on  society,  and  the  few  highly  inflammatory  news  reports 
on  AIDS  has  done  considerable  damage." 

Winsten  adds: 

"The  absence  of  concrete  information  on  AIDS,  its  cause,  its 
mode  of  transmission  and  the  extent  to  which  it  might  spread,  per- 
mits public  fears  to  grow  unrestrained." 

For  a  variety  of  reasons  the  homosexual  community  and  the  pop- 
ular media  chose  to  focus  extraordinary  attention  on  AIDS.  Unfor- 
tunately, the  resultant  hysterical  reaction  in  some  segments  of  our 
society  has  been  an  undesirable  and  unneeded  result. 

We  should  not  lose  sight  of  a  simple  fact.  With  the  knowledge 
they  have  now,  medical  researchers  will  readily  state  that  most 
people  are  not  going  to  get  AIDS.  Homosexual  males,  particularly 
those  with  very  high  numbers  of  sexual  liaisons,  intravenous  drug 
abusers  and  users,  hemophiliacs,  and  Haitians  are  the  groups  at 
risk.  Let  me  emphasize  that  we  need  to  protect  these  people,  we 
need  to  help  them,  but  AIDS  is  not  spreading  widely  on  a  geo- 
graphic or  demographic  basis. 

We  want  an  AIDS  cure;  we  need  AIDS  prevention.  If  counselors, 
sensitive  to  the  affected  communities,  must  speak  to  lifestyle  issues 
to  help  prevent  AIDS,  I  urge  them  to  do  it.  Topics  like  sexual  activ- 
ity or  drug  abuse  are  never  comfortably  discussed  but  doctors, 
mental  health  officials,  and  community  counselors  must  be  pre- 
pared to  do  so  if  it  can  mean  one  less  person  with  AIDS. 

I  spoke  of  a  cure,  and  I  believe  we  will  eventually  solve  this 
medical  mystery.  It  will  be  done,  most  likely,  by  painstaking  re- 
search and  through  an  accumulation  of  knowledge.  We  should  be 
careful  to  avoid  the  inevitable  push  for  more  money  as  if  dollars 
are  a  magic  potion. 

Let's  let  our  scientists  work.  We  can  prod  them,  but  let  us  allow 
for  the  time  needed  to  get  all  the  facts;  let  us  have  the  necessary 
peer  review  and  let  us  have  the  studies  and  exchange  of  informa- 


tion  that  will  eliminate  this  awful  problem.  More  money  may  be 
needed  but  let  us  use  our  resources  wisely. 

Attention  has  certainly  been  focused  on  AIDS.  Research  is  un- 
derway within  Federal  agencies  and  in  university  and  private  labo- 
ratories. Let  us  maintain  our  perspective,  deal  in  facts,  and  hope 
for  the  earliest  possible  resolution  of  this  unfortunate  problem. 

Thank  you,  Mr.  Chairman. 

Mr.  Weiss.  Thank  you  very  much,  Mr.  Walker. 

Before  we  proceed,  I  indicated  previously  that  Mrs.  Boxer,  who  is 
a  member  of  the  full  committee,  is  with  us.  We  have  also  been 
joined  by  Mrs.  Burton  of  California.  We  may  have  other  members 
join  us  during  the  course  of  these  hearings  today  and  tomorrow. 

Without  objection,  I  would  like  permission  from  the  subcommit- 
tee to  allow  any  members  on  the  full  committee  or  Members  of  the 
House  to  join  with  us  and  to  participate  to  the  extent  that  their 
time  permits.  Without  objection,  it  is  so  directed. 

Let  me  ask  at  this  point  Mr.  Craig  if  he  has  any  comments  to 
make. 

Mr.  Craig.  I  compliment  you  on  holding  these  hearings.  I  think 
that  Mr.  Walker  has  stated  both  the  obvious  and  the  necessary  as 
it  relates  to  this  most  critical  national  problem.  I  hope  that  this 
hearing,  and  those  who  attend  and  participate  in  this  hearing  over 
the  next  couple  of  days,  will  focus  not  only  on  what  we  are  current- 
ly doing,  but  what  must  be  done  to  bring  this  problem  within  the 
bounds  of  control,  and  hopefully  to  find  a  solution  and  a  cure  to 
this  disease. 

From  what  I  have  heard  and  am  now  aware  of,  there  appears  to 
be  a  growing  national  hysteria  that  need  not  continue  if  the  kind 
of  information  that  can  go  forth  from  this  hearing  is  allowed  to  go 
forth  and  is  responsibly  reported  in  the  press.  It  cannot  be  treated 
in  that  way  if  we  are  to  bring  it  to  a  conclusion  and  allow  the  agen- 
cies of  this  Government,  who  are  now  pouring  millions  of  dollars 
into  the  necessary  and  appropriate  research  for  this  problem,  are 
allowed  to  address  it  in  the  only  way  they  can,  as  it  relates  to 
medical  science  and  the  proper  procedures  for  bringing  this  prob- 
lem to  a  conclusion. 

I  hope  that  is  the  goal  of  this  hearing.  If  it  is  handled  and  con- 
ducted in  a  responsible  fashion,  that  certainly  can  be  the  outcome, 
and  we  can  be  direct  participants  in  solving  this  most  important 
national  problem,  Mr.  Chairman. 

Thank  you. 

Mr.  Weiss.  Thank  you,  Mr.  Craig. 

Mrs.  Boxer? 

Mrs.  Boxer.  Thank  you. 

I  want  to  thank  the  members  of  the  committee  for  allowing  me 
to  participate  in  this  particular  subcommittee  hearing  on  a  subject 
that  is  very  close  to  my  heart  and  to  my  congressional  district.  I 
want  to  thank  the  chairman  for  holding  these  hearings  and  for  the 
leadership  he  has  shown  in  fighting  this  disease,  and  I  have  worked 
with  him  on  many  bills. 

The  tragedy  of  AIDS  disease  is  very  well  known,  as  I  said,  to  my 
congressional  district.  But  only  with  the  understanding  of  Members 
of  Congress  from  all  over  this  country  will  we  be  able  to  win  this 
fight. 


Recently  the  Congress  appropriated  $12  million  for  AIDS  re- 
search. We  need  to  do  more.  Dollars  will  have  to  fund  this  research 
just  as  dollars  funded  research  for  all  other  baffling  disease. 

These  hearings  give  us  an  opportunity  to  examine  how  well  our 
Government  is  responding,  and  what  more  we  can  do  to  ease  the 
pain  and  ease  the  fears  of  the  American  people  and,  above  all,  help 
to  find  the  cause  and  cure  of  AIDS. 

Thank  you,  Mr.  Chairman. 

Mr.  Weiss.  Thank  you,  Mrs.  Boxer. 

We  have  just  been  joined  by  one  of  the  more  active  members  of 
the  subcommittee,  Mr.  McCandless. 

Would  you  care  to  make  an  opening  comment? 

Mr.  McCandless.  Thank  you  very  much,  Mr.  Chairman. 

I  have  no  statement  at  this  time. 

Mr.  Weiss.  Thank  you. 

I  think  we  are  ready  to  proceed  at  this  point  with  the  hearing. 

I  think  the  best  place  to  begin  is  to  hear  from  witnesses  who  are 
struggling  each  day  with  the  terrifying  prognosis  of  AIDS,  the 
names  and  faces  behind  the  statistics  announced  each  week.  They 
are  here  to  share  their  personal  and  unique  experiences,  to  help 
the  Government  become  more  responsive  and  sensitive  to  their 
needs,  and  to  participate  in  the  decisionmaking  that  affects  their 
survival. 

We  are  an  oversight  and  investigative  committee.  We  administer 
an  oath  or  affirmation  to  each  of  our  witnesses. 

So  first  let  me  introduce  the  three  of  you:  Michael  Callen  of  New 
York,  Roger  Lyon  of  San  Francisco,  and  Anthony  Ferrara  of  Wash- 
ington, D.C. 

We  want  to  welcome  each  of  you  on  behalf  of  the  subcommittee. 
We  very  much  appreciate  your  willingness  to  come  before  this  sub- 
committee and  share  with  us  your  personal  experiences  and 
thoughts  regarding  this  epidemic. 

I  would  appreciate  if  you  would  all  stand  at  this  point,  raise  your 
right  hands. 

Do  you  affirm  to  tell  the  truth,  the  whole  truth,  and  nothing  but 
the  truth? 

Let  the  record  indicate  each  of  the  witnesses  has  nodded  affirma- 
tively. 

Thank  you. 

We  have  asked  you,  instead  of  submitting  prepared  statements, 
as  is  the  usual  course,  if  you  would  simply  each  briefly  recount 
your  own  story  of  being  diagnosed  and  describe  the  emotional  and 
physical  dimensions  of  the  change  in  your  life.  If  we  may,  let  us 
begin  with  you,  Mr.  Callen. 

STATEMENT  OF  MICHAEL  CALLEN,  NEW  YORK  CITY 

Mr.  Callen.  In  December  of  1981  I  had  some  blood  testing  done 
by  my  private  physician,  and  those  tests  indicated  that  I  was 
immune  deficient.  In  December  of  1981  there  was  very  little  known 
about  this  disease,  but  there  was  in  the  gay  press  beginning  to  be 
reports  of  increased  instances  of  very  unusual  diseases,  and  they 
outlined  some  of  the  symptoms.  I  was  very  concerned  because  I  had 
some  of  these  symptoms — fevers,  night  sweats,  general  lymphade- 


nopathy,  swelling  of  the  lymph  nodes,  malaise,  fatigue.  So  I  had 
myself  tested  and,  as  I  indicated,  in  December  of  1981  I  was  told  I 
was  immune  deficient. 

The  effect  of  being  told  that  I  was  immune  deficient  was  devas- 
tating. I  called  my  parents  and  said  "I  am  going  to  die."  I  was  not 
hospitalized  until  the  summer  of  1982,  when  I  was  diagnosed  with 
cryptospordiosis,  which  is  one  of  the  qualifying  opportunistic  infec- 
tions according  to  the  CDC  definition  of  this  syndrome. 

I  was  hospitalized  for  over  a  week  with  what  is  known  as  the 
wasting  syndrome.  It  was  the  lowest  point  of  my  life.  I  was  con- 
vinced from  everything  I  read  and  heard  that  I  was  going  to  die. 
But  I  recovered  from  that  specific  infection,  and  I  was  rehospita- 
lized  in  the  fall  of  1982.  They  suspected  Pneumocystis  pneumonia.  I 
had  a  bronchoscopy  performed  and  other  tests.  It  turned  out  to  be 
bronchitis.  But  my  story  really  illustrates  one  of  the  consistent  sto- 
ries for  people  who  have  this  syndrome.  So  little  is  known. 

When  my  doctor  indicated  to  me  in  December  of  1981  that  I  was 
immune  deficient  I  said,  "What  does  that  mean?"  And  he  said, 
"We  don't  know."  So  now  a  lot  of  people  who  are  being  told  they 
are  immune  deficient  are  simply  waiting,  waiting  for  the  next  in- 
fection. 

Now,  I  have  come  to  believe  that  I  am  going  to  beat  this  disease. 
I  no  longer  think  that  I  am  going  to  die.  But  it  is  very  difficult 
when  you  pick  up  newspapers  or  turn  on  the  television  and  you 
hear  that  no  one  has  fully  recovered  from  this  syndrome,  and  that 
80  percent  of  those  diagnosed  with  the  syndrome  are  dead  after  2 
years. 

So  I  guess  that  is  my  story — waiting  around  for  infections,  check- 
ing myself  every  morning  for  Kaposi's  sarcoma  lesions  and  waiting 
for  information  about  this  disease  to  be  forthcoming. 

Mr.  Weiss.  Thank  you  very  much,  Mr.  Callen. 

Mr.  Lyon. 

STATEMENT  OF  ROGER  LYON,  SAN  FRANCISCO,  CALIF. 

Mr.  Lyon.  Thank  you,  Mr.  Chairman. 

I  was  diagnosed  with  Kaposi  sarcoma  on  February  3  of  this  year. 
Prior  to  that  time  I  was  having  absolutely  no  AIDS-related  symp- 
toms whatsoever.  On  physical  exam  at  that  time  three  lesions  were 
found  internally.  Prior  to  that  I  was  being  treated  for  an  amoebic 
disorder,  no  real  symptoms  of  AIDS. 

February  3,  basically  100,  I  think  more  exactly  180  days  ago,  I 
became  aware  I  had  a  life-threatening  disease.  February  4  I  en- 
tered UC,  I  went  to  University  of  California  without  an  appoint- 
ment, at  the  suggestion  of  my  doctor,  and  started  what  is  called 
their  staging  process — a  battery  of  tests  to  determine  the  extent  of 
this  disease.  At  that  time  I  was  basically  numb.  I  had  no  feeling.  I 
was  just  moving.  UC  has  been — they  have  been  very  kind  and  help- 
ful. 

One  of  the  tests  that  is  used  to  determine  the  extent  of  a  disease 
today  diagnosed  as  Pneumocystis  pneumonia,  which  my  doctor  was 
100  percent  sure  I  had,  was  a  bronchoscopy. 

On  February  28  I  went  in  for  a  bronchoscopy,  which  is  basically 
an  invasive  procedure,  a  lung  biopsy.  At  that  time  the  doctors  took 


six  biopsies.  One  of  the  biopsies,  unfortunatley,  gave  me  a  pneumo- 
thorax, collapsed  my  lung,  and  at  that  time  I  was  hospitalized  for  4 
days.  Also,  at  this  time  my  family  was  visiting,  they  had  no  idea  of 
what  was  going  on,  did  not  at  that  time  even  know  that  I  was  gay. 
So  the  first  time  they  saw  me  was  in  the  hospital  with  chest  tubes, 
and  they  were  quite  concerned.  Fortunately  for  me,  they  took  ev- 
erything as  well  as— better  than  I  could  ever  expect.  They  were 
wonderful. 

Since  then  I  have  gone  through  the  staging  process,  upper  and 
lower  endoscopies,  other  invasive  procedures.  They  wanted  to  do 
lymph  node  biopsies  to  determine  whether  it  is  in  the  lymph  nodes 
but  I  refused.  Fortunately,  I  hve  been  very  lucky.  The  disease,  the 
Kaposi's  sarcoma,  has  not  spread.  There  were  three  lesions,  one 
was  biopsied.  The  remaining  two  appear  to  have  disappeared,  gone 
into  remission.  That  does  not  mean  I  do  not  have  AIDS.  Basically 
that  means  I  do  not  have  symptoms  of  Kaposi's  sarcoma  at  this 
time.  But  my  immune  system  is  still  very  suppressed  and  extreme- 
ly susceptible  to  many  opportunistic  infections. 

Since  that  time,  in  late  April  I  came  down  with  a  very  severe 
shortness  of  breath.  The  doctor  again  thought  I  had  Pneumocystis 
pneumonia.  Fortunately,  he  was  only  80  percent  sure  at  this  time.  I 
was  convinced  that  it  was  not.  They  did  another  bronchoscopy  and 
they  found  cytomegalovirus.  That  was  all.  Since  then,  that  has 
cleared  up,  and  I  have  been  very  fortunate  that  no  other  symptoms 
have  appeared. 

However,  it  is  a  matter  of  day-to-day  waiting,  waiting  for  some- 
thing to  happen,  living  in  constant  fear  that  I  am  going  to  wake  up 
one  morning  to  find  lesions,  waking  up  finding  that  I  have  some 
other  opportunistic  infection,  cryptospordiosis,  possibly  Pneumocys- 
tis pneumonia. 

At  this  time  I  am  basically  living  in  fear  of  what  is  to  come. 
Other  than  that,  it  is  a  day-to-day  wait-and-see  process. 

Mr.  Weiss.  How  old  are  you? 

Mr.  Lyon.  34. 

Mr.  Weiss.  Mr.  Callen,  how  old  are  you? 

Mr.  Callen.  28. 

Mr.  Weiss.  Mr.  Ferrara? 

Mr.  Ferrara.  30. 

Mr.  Weiss.  If  you  will  respond  to  the  question  that  we  asked. 

STATEMENT  OF  ANTHONY  FERRARA,  WASHINGTON,  D.C. 

Mr.  Ferrara.  The  first  idea  there  was  something  wrong  with  me 
was  last  summer.  I  had  lymphadenopathy,  swollen  lymph  glands 
especially  around  the  jaws  and  throat  and  under  the  arms.  That 
continued  for  a  few  months,  but  the  whole  time  I  felt  quite  good.  I 
continued  to  run  and  jog  and  I  experienced  no  fatigue,  no  night 
sweats,  no  fevers.  In  fact,  in  November,  I  finished  the  Marine 
Corps  marathon,  when  I  was  supposedly  very,  very  ill. 

The  lymphadenopathy  went  away.  So  I  thought  nothing  further 
of  it.  But  all  along,  I  had  been  reading  about  AIDS,  and  of  course, 
as  every  conscious  gay  man  should  be,  was  very  worried  about  it. 

In  February,  I  saw  two  small  purple  lesions,  one  on  the  inner 
aspect  of  each  of  my  lower  thighs,  and  I  knew  what  they  were,  or  I 


8 

knew  what  they  could  be,  and  I  said  I  would  wait  a  month  and  if 
they  were  still  there  in  a  month  I  would  seek  treatment  or  seek  a 
diagnosis.  Well,  in  the  beginning  of  March  they  were  still  there. 

I  belong  to  the  George  Washington  University  HMO.  I  went 
there  and  told  them  that  they  really  should  biopsy  one  of  these  le- 
sions to  see  what  it  was,  gave  them  my  sexual  history  and  told 
them  that  there  was  a  good  chance  I  did  have  AIDS.  They  biopsied 
it,  and  the  diagnosis  was  Kaposi's  sarcoma.  That  was  March  8. 

Obviously  the  first  day  I  was  very,  very  upset,  and  I  went  into  a 
deep  depression  for  about  a  month.  I  came  home  that  night  and  my 
significant  other  held  me  in  his  arms,  and  I  said  to  him,  "Why  do  I 
feel  like  Ali  McGraw,  it  is  just  like  a  movie,  it  is  really  terrible,  it 
is  the  most  horrible  thing  that  ever  happened." 

My  depression  lasted  a  month,  and  I  decided  if  there  was  any 
chance  I  was  going  to  get  over  this,  if  I  had  any  chance  of  surviving 
at  all,  I  would  have  to  have  a  more  positive  attitude  and  just  con- 
tinue on,  live  my  life  as  best  I  can,  and  try  to  not  worry  about  it 
too  much. 

I  was  very  lucky.  I  had  the  choice  of  being  treated  at  GW  by  a 
very  good  cancer  specialist  there,  who  instilled  a  great  deal  of  con- 
fidence in  me,  or  I  had  the  choice  of  being  treated  at  the  National 
Institutes  of  Health.  I  think  it  was  an  easy  choice,  because  I 
think— NIH  wanted  me  because  I  was  so  healthy  at  that  point.  I 
was  a  good  specimen  for  research  I  think.  And  also,  I  felt  that  if  I 
have  the  disease  and  no  one  knows  anything  about  it,  the  best 
place  to  be  treated  would  be  where  they  are  doing  the  research. 

The  choices  were  being  treated  at  GW,  with  a  mild  form  of  chem- 
otherapy called  VP-16,  which  now  is  thought  doesn't  have  much 
effect  on  Kaposi's  sarcoma,  or  being  treated  with  interferon  at 
NIH.  So  I  have  been  on  and  off  at  NIH  since  then.  I  have  gone 
through  two  protocols,  one  was  alpha  interferon,  and  the  second 
was  gamma  interferon.  Both  are  made  from  blood  cells,  one  is 
made — the  gamma  interferon  is  made  from  the  immune  blood  cells 
themselves,  that  is  my  understanding. 

I  am  going  to  go  back.  In  fact  when  I  leave  here  today  I  am  going 
back  there  and  probably  going  to  spend  the  next  6  weeks  doing  a 
third  protocol,  2  to  3  weeks  of  plasma  pheresis,  and  then  interleu- 
ken  2,  which  has  been  getting  a  lot  of  press  lately.  And  that  brings 
me  to  today. 

Mr.  Weiss.  Thank  you  very  much. 

Because  I  know  that  all  of  my  colleagues  on  the  panel  will  have 
numerous  questions  and  because  we  have  a  large  number  of  wit- 
nesses, I  am  going  to  defer  further  questions  on  my  part  and  begin 
the  5-minute  questioning  phase.  At  the  end  of  the  questioning,  if 
there  are  still  areas  that  you  feel  we  have  not  touched  on,  I  will 
give  you  an  opportunity  to  come  back  and  fill  in  whatever  gaps 
exist. 

With  that,  if  I  may,  let  me  ask  Mr.  Walker  if  he  has  questions. 

Mr.  Walker.  Thank  you,  Mr.  Chairman. 

Mr.  Ferrara,  what  has  been  the  attitude  of  the  nurses,  the  tech- 
nicians, and  the  officials  at  NIH  toward  you  and  the  other  persons 
with  AIDS  who  are  under  treatment  at  NIH? 

Mr.  Ferrara.  I  think  the  nurses  and  the  doctors  that  deal  with 
us  the  most,  those  in  the  Institute  of  Allergies  and  Infectious  Dis- 


eases  and  in  the  National  Cancer  Institute,  are  invariably  compas- 
sionate and  helpful.  The  nurses  and  doctors  take  the  minimal  pre- 
cautions possible. 

When  the  nurses  may  come  into  contact  with  our  blood,  for  ex- 
ample when  they  give  us  an  IV,  or  they  give  us  a  shot,  they  will 
wear  gloves.  Other  than  that,  very  few  precautions  are  taken, 
except  handwashing  when  entering  and  leaving  the  room.  The  doc- 
tors very  often  do  not  use  gloves  to  examine  us. 

The  doctors  of  course  are  researchers.  So  sometimes,  because 
they  are  researchers,  they  are  not  really  schooled  in  the  best  bed- 
side manner,  but  I  think  generally  they  are  extremely  compassion- 
ate. They  are  working  very  hard,  many  of  the  doctors  are  there 
from  morning  until  late  at  night.  They  are  as  desperate  to  find  a 
solution  to  this  problem  as  we  are. 

Mr.  Walker.  Some  critics  of  the  Federal  response  to  AIDS  have 
criticized  the  use  of  interferon,  which  you  said  you  have  been  treat- 
ed with,  and  the  potential  of  interleuken  2.  I  understand  that  you 
are  going  to  undergo  treatment  with  interleuken  2.  Could  you  tell 
the  subcommittee  how  you  feel  about  the  treatment  that  you  have 
had  with  interferon,  and  then  also  whether  you  are  optimistic  or 
pessimistic  about  your  upcoming  treatment  with  interleuken  2? 

Mr.  Ferrara.  The  first  type  of  interferon,  the  alpha  interferon, 
which  I  believe  is  being  used  elsewhere  in  the  country,  I  felt  had 
some  effect.  I  felt  that  it  stopped  the  spread  of  the  Kaposi's.  I  felt 
that  there  was  some  remission. 

The  doctors,  however,  felt  that  the  response  was  not  good  enough 
to  continue.  They  would  like  to  see  a  50  percent  remission  before 
they  would  continue  with  a  particular  drug. 

I  think  the  problem  with  interferons  is  that  there  is  very  little 
known.  They  are  still  being  experimented  with.  It  is  like  penicillin 
when  it  was  first  discovered,  they  didn't  know  what  dosage  to  give, 
they  didn't  know  how  to  give  it.  I  think  that  is  the  problem  the 
doctors  are  experiencing  with  the  interferon.  I  think  there  is  hope 
there. 

The  second  type  of  interferon,  whether  it  was  the  dosage  or 
whether  it  was  for  other  reasons,  whether  the  drug  itself  simply 
did  not  work,  there  was  a  spread  in  my  Kaposi's  lesions.  I  felt  that 
the  gamma  interferon  had  no  effect  at  all. 

Obviously  I  am  very,  very  hopeful  for  interleuken  2.  Every  AIDS 
patient  clings  to  hope.  And  the  laboratory  results  for  interleuken  2 
are  extremely  good.  The  doctors  feel  it  has  the  potential,  although 
the  results  at  this  point  are  inconclusive — it  has  the  potential  of  re- 
storing the  immune  system  to  near  normal. 

My  layman's  understanding  of  what  it  does,  and  this  might  be 
more  beneficial  to  you  than  what  the  doctors  tell  you,  is  that  it  es- 
sentially bypasses  the  T-4  cells,  the  helper  cells,  and  it  is  the  sub- 
stance that  the  T-4  cells  emit  to  tell  the  other  body  cells  to  fight 
disease.  An  analogy  would  be  insulin  for  diabetics.  It  would  bypass 
the  T-4  cells  and  have  the  effect  that  those  cells  would  have  on 
their  own. 

Mr.  Walker.  Thank  you,  Mr.  Chairman. 

Mr.  Weiss.  Thank  you,  Mr.  Walker. 


10 

I  want  to  take  note  of  the  fact  that  we  have  just  been  joined  by 
another  outstanding  Member  of  the  House  on  our  committee,  Mr. 
Levin  of  Michigan.  Welcome. 

Mrs.  Boxer. 

Mrs.  Boxer.  Thank  you,  Mr.  Chairman. 

I  wanted  to  ask  the  panel,  if  anyone  can  address  this,  if  you  feel 
that  you  are  given  enough  information  about  the  disease,  and  then 
the  second  part,  do  you  think  that  the  gay  communities  throughout 
the  country,  from  your  knowledge,  are  being  given  enough  informa- 
tion so  that  they  can  perhaps  make  some  changes  in  their  life  to 
try  and  avoid  it. 

Would  you  comment  on  that? 

Mr.  Callen.  Well,  I  am  still  using  the  same  information  that  I 
knew  in  early  1982  when  people  asked  me  questions  about  the  dis- 
ease. As  far  as  I  can  tell,  there  hasn't  been  much  new  information 
at  all.  Some  members  of  my  community  appear  to  be  numb,  be- 
cause there  hasn't  been  much  new  about  the  disease  coming  out 
from  research  centers.  A  lot  of  people  just  don't  want  to  hear  about 
it  any  more,  and  they  say  "when  you  have  the  cure,  let  us  know." 

I  think  that  certainly  in  New  York  City  the  gay  community  has 
been  straining  to  make  what  little  information  there  is  available  in 
a  way  that  is  accessible  to  the  community,  and  organizations  like 
the  Gay  Men's  Health  Crisis  have  done  an  outstanding  job  dissemi- 
nating what  little  information  exists. 

Mrs.  Boxer.  Mr.  Lyon. 

Mr.  Lyon.  In  San  Francisco  it  is  very  much  the  same  experience 
as  New  York.  There  is  no  new  information.  Every  bit  of  informa- 
tion that  has  come  out  has  been  very  widely  disseminated.  People 
are  hungry  for  information.  The  city  government,  the  public  health 
officials,  the  city  of  San  Francisco  have,  as  far  as  I  am  concerned, 
gone  overboard  and  made  information  available.  Public  forums 
have  been  held.  Many  of  the  health  care  facilities  have  asked  pa- 
tients and  health  care  officials  to  come  and  explain,  "tell  us  every- 
thing you  know,  give  us  the  information  in  order  that  we  can 
dispel  many  of  the  fears." 

The  main  problem  is  there  is  no  new  information.  It  is  a  rehash 
over  and  over  and  over  again  of  the  same  information. 

Mr.  Ferrara.  I  agree  with  Mr.  Lyon.  I  believe  the  problem  is 
more  misinformation  than  lack  of  information. 

I  do  my  best  to  do  as  much  as  I  can  to  dispel  misconceptions 
about  the  disease.  People  don't  have  to  be  afraid  to  be  in  the  same 
room  with  us,  people  don't  have  to  be  afraid  to  swim  in  the  same 
swimming  pool.  I  believe  that  gay  organizations  across  the  country 
should  be  given  more  information  concerning  guidelines  that  can 
be  disseminated  to  the  gay  community  in  terms  of— in  terms  of 
ways  that  gay  men  can  protect  themselves  from  the  disease,  rather 
than  causing  the  paranoia  and  hysteria  that  the  information  that 
has  been  disseminated  so  far  has  caused. 

Mrs.  Boxer.  Do  I  have  time  for  one  last  question? 

Do  you  find  that  you  have  a  support  system  out  in  your  commu- 
nities to  help  you  get  through  this  experience? 

Mr.  Ferrara.  Shall  I  start? 

Yes.  Personally,  my  support  system  is  quite  good.  I  have  a  lover 
who  has  been  very  supportive  and  very  loving.  I  have  good  friends 


11 

who  help  me  a  great  deal.  No  one  has  shunned  me.  My  employers 
have  been  very  good  to  me.  They  have  given  me  a  parking  space 
downtown  so  I  won't  have  to  ride  on  the  Metro. 

I  believe  the  gay  community  can  do  more  to  provide  support 
services  for  people  who  are  stricken  with  the  disease.  I  think  part 
of  the  problem  there  is  again  a  lack  of  information. 

The  gay  groups  in  Washington  are  having  great  difficulty  finding 
out  who  needs  help.  I  think  there  must  be  more  coordination  be- 
tween the  hospitals  who  treat  AIDS  patients  and  the  gay  communi- 
ty support  services.  There  is  a  problem  there  of  course  with  doctor- 
patient  confidentiality.  But  I  believe  that  can  be  gotten  around  by 
having  the  hospitals  involved  and  the  doctors  involved  make  the 
patients  aware  that  these  support  services  are  available. 

For  example,  the  doctors  and  the  nurses  at  NIH  are  very  com- 
passionate and  very  supportive.  But  they  are  not  gay.  They  don't 
understand  the  special  psychological  needs  of  gay  people.  The  gay 
community  can  help  there,  and  I  believe  that  many  of  the  hospitals 
who  are  treating  AIDS  patients  are  hindering  those  efforts. 

I  believe  that  information  can  be  disseminated  and  without 
breaching  the  doctor-patient  confidentiality  problem. 

Mr.  Callen.  I  cofounded  a  support  group  called  Gay  Men  With 
AIDS,  which  is  run  by  those  of  us  gay  men  who  have  been  diag- 
nosed with  the  syndrome.  It  has  made  the  difference  for  me.  It  is 
really  what  relieved  some  of  the  fear  on  a  day-to-day  basis.  I  saw 
other  people  fighting  for  their  lives.  We  share  information,  we  talk 
about  doctors,  hospitals,  and  treatments.  For  me  AIDS  was  another 
closet,  was  another  coming  out. 

When  I  was  first  diagnosed  there  wasn't  the  terrible  stigma  that 
is  attached  to  being  diagnosed  with  AIDS  now.  So  it  never  occurred 
to  me  not  to  identify  myself  to  my  friends  as  having  the  disease. 
But  since  that  time,  because  of  a  lot  of  the  misinformation  and 
often  hysterical  coverage  in  the  media,  I  know  a  number  of  people 
who  refuse  to  identify  themselves  to  their  community,  even  to  their 
family,  as  having  the  syndrome,  because  there  is  such  tremendous 
stigma  and  isolation  attached  to  it. 

But  my  support  group  meets  in  my  living  room,  because  there 
isn't  any  other  space.  I  know  in  New  York  City  we  are  trying  to  get 
a  community  center,  but  apparently  we  are  going  to  have  to  raise 
$2  million  to  purchase  it. 

I  am  a  member  of  another  support  group  which  meets  in  the 
cramped  offices  of  the  National  Gay  Task  Force.  I  am  really  glad 
they  have  made  this  space  available.  But  it  interrupts  their  activi- 
ties. We  sit  in  the  room  where  their  hotline  is.  And  people  come 
and  go. 

I  think  that  there  is  a  need  for  government  to  support  the  com- 
munity-based efforts  in  the  various  cities,  to  make  support  services 
available  to  people  who  need  it. 

Mr.  Lyon.  My  support  system  is  primarily  all  private.  Friends,  I 
have  a  fantastic  group  of  friends  who  have  been  behind  me,  in 
every  decision  that  I  have  made  all  the  way  through.  My  family  is 
right  there  also. 

There  are  also  some  other  private  groups.  One  I  will  mention, 
the  Shanty  Group,  the  AIDS-KS  Foundation.  Information?  There 
are  phone  lines  available  if  you  want  to  call  someone,  if  you  want 


12 

to  talk  any  time  of  the  day,  they  are  there.  Primarily  personal  sup- 
port groups.  Nothing  that  anyone  else,  including  the  Federal  Gov- 
ernment, has  set  up.  It  is  all  personal.  And  I  think  those  are  the 
best  support  groups. 

Mrs.  Boxer.  Thank  you,  Mr.  Chairman. 

Mr.  Weiss.  Thank  you  very  much. 

Mr.  McCandless. 

Mr.  McCandless.  Thank  you,  Mr.  Chairman. 

Gentlemen,  the  Department  of  Health  and  Human  Services  has 
supplied  us  with  statistics.  I  find  them  interesting  and  wish  to 
throw  them  out  for  whatever  value  it  may  be. 

If  you  wish  to  comment,  it  might  be  of  assistance  to  us,  and  par- 
ticularly me,  in  understanding  the  circumstances  a  little  better. 

According  to  these  statistics,  the  total  cases  reported,  both 
United  States  and  foreign,  are  approximately  2,100.  Of  these  two- 
thirds  are  in  the  States  of  New  York  and  California,  with  the 
greatest  percentage  in  the  metropolitan  areas  of  New  York  City, 
San  Francisco,  and  Los  Angeles. 

Can  you  comment  on  why  there  is  a  concentration  of  cases  in 
these  areas  with  respect  to  the  total  figures,  and  the  rest  of  the 
United  States? 

Mr.  Callen.  Well,  I  am  not  an  epidemiologist.  I  think  it  indicates 
there  are  many,  many  unusual  features  about  this  syndrome.  It  in- 
dicates the  need  for  really  high  quality  epidemiological  research  to 
explain  the  unusual  pattern  of  this  disease.  And  to  date,  none  of 
the  epidemiology  has  been  published. 

One  hears  rumors  that  the  epidemiology  of  the  CDC  was  poorly 
constructed  and  poorly  written.  I  don't  know  what  the  reason  is, 
but  I  understand  that  they  have  had  some  difficulty  finding  a 
medical  journal  to  publish  the  study. 

The  question  of  epidemiology  and  why  the  disease  seems  to  be 
clustered  in  large  urban  centers  will  tell  us  a  lot  about  who  gets 
this  disease  and  who  doesn't  and  why.  And  so  I  don't  have  any 
more  answers  than  anybody  else.  But  I  am  very,  very  eager  for  the 
epidemiology  to  be  done  and  done  right  and  done  quickly. 

Mr.  Weiss.  May  I  indicate,  although  obviously  the  question  is  ab- 
solutely appropriate  to  these  witnesses,  there  will  be  additional  wit- 
nesses in  panels  later  on  who  can  address  some  of  the  expert  areas. 

Mr.  McCandless.  Thank  you. 

That  is  all  I  have  at  this  time,  Mr.  Chairman. 

Mr.  Weiss.  Thank  you,  Mr.  McCandless. 

Mr.  Levin. 

Mr.  Levin.  I  don't  have  any  questions. 

Thank  you  for  your  testimony. 

Mr.  Craig. 

Mr.  Craig.  Thank  you  very  much. 

To  all  of  you  on  the  panel,  thank  you  for  your  openness,  your 
honesty  and  forthrightness  in  your  testimony.  It  is  critically  impor- 
tant that  you  are  willing  to  come  forward  and  discuss  this  serious 
problem  in  the  way  you  have— if  we  are  to  be  participants  here  in 
helping. 

I  have  a  couple  of  questions,  I  think  reflective  of  how  the  gay 
community  is  responding.  You  mentioned  earlier,  some  fears  and 
concerns  on  your  part  and  the  community's  part. 


13 

Has  there  been,  or  is  there  now,  because  of  the  fear  of  this  dis- 
ease, an  exodus  if  you  will,  from  the  areas  or  the  communities  Mr. 
McCandless  talked  about.  New  York  and  San  Francisco  specifically 
where  the  larger  number  of  cases  are  reported.  In  places  where  it 
seems  to  be  relatively  well  understood  that  there  are  large  popula- 
tions in  the  gay  community— have  people  left  the  community  out 
of  fear?  Are  they  leaving? 

Would  any  of  you  respond  to  that,  as  best  you  can? 

Mr.  Ferrara.  Well,  first  of  all,  I  think  it  is  impossible  to  leave 
the  gay  community.  You  are  either  a  member  of  the  community  or 
not. 

Mr.  Craig.  OK.  That  is  a  valid  statement. 

What  I  am  saying  is,  are  the  gays  leaving  the  area  in  which  they 
resided  because  of  fear? 

Mr.  Ferrara.  I  see.  No,  I  don't  think  so.  I  think  we  are  being 
much  more  careful  about— they  are  much  more  worried.  But  I 
don't  think  there  is  a  mass  exodus  from  large  urban  areas. 

Mr.  Lyon.  I  haven't  seen  or  even  considered  the  fact  that  there 
has  been  an  exodus  from  any  area.  I  think  what  we  are  finding 
within  the  gay  community  is  a  very  strong  bonding,  a  coming  to- 
gether, a  recognition  of  a  problem.  I  think  that  it  is  strengthening 
the  gay  community.  I  don't  see  anyone  leaving  because  of  the  fear 
of  AIDS. 

Mr.  Callen.  Many  of  us  go  into  these  specific  cities  to  escape  the 
prejudice  that  we  experience  as  gay  and  lesbian  people.  So  where 
else  are  we  going  to  go?  Also,  as  was  mentioned,  our  support  sys- 
tems are  in  these  cities — our  jobs,  where  we  will  get  our  insurance. 
For  most  people  there  is  not  the  option  to  go  anywhere  else.  If  you 
are  an  openly  gay  person— you  have  to— most  gay  people  I  know 
tend  to  congregate  in  large  urban  centers,  because  there  is  per- 
ceived to  be  greater  tolerance. 

Mr.  Craig.  With  those  responses  in  mind,  you  say  there  is  a 
growing  bond,  if  you  will,  toward  support  and  assistance  within 
the  community.  Does  the  gay  community  view  themselves  as  a 
direct  participant  in  assisting  in  getting  this  problem  under  con- 
trol? Because— one  of  you  made  some  comments  earlier  that  there 
seems  to  be  a  reaction  on  the  part  of  some — I  don't  want  to  hear 
any  more  about  it,  tell  me  when  there  is  a  cure,  or  tell  me  when 
there  is  new  information,  but  until  that  point  don't  bother  me. 

My  reaction  to  that  comment  was  that  that  would  be  very  nega- 
tive to  any  assistance  that  a  cooperative  effort  on  the  part  of  medi- 
cal science  and  the  community  working  towards  a  solution  to  the 
problem.  Is  that  a  prevalent  attitude  in  the  community,  or  was  it  a 
reaction  that  is  now  turning  about  toward  cooperation? 

Mr.  Callen.  I  think  there  has  been  unprecedented  cooperation 
from  the  community.  If  money  were  available  for  screening,  I  #iink 
you  would  have  the  entire  community  available. 

When  I  made  the  comment  that  there  are  some  people  who  don't 
want  to  hear,  the  reason  they  don't  want  to  hear  is  because  there 
is  no  new  information.  They  have  already  absorbed  the  old  infor- 
mation, and  they  don't  like  to  be  beat  over  the  head  with  the  same 
old  information.  They  have  already  made  whatever  adjustments 
that  they  plan  to  make  to  protect  themselves  from  the  disease,  and 


26-097    0—83 2 


14 

a  lot  of  people  are  very,  very  tired  of  dwelling  on  the  tragedy  of 
this  disease. 

Mr.  Craig.  Thank  you,  Mr.  Chairman. 

Mr.  Weiss.  Thank  you,  Mr.  Craig. 

We  have  touched  on  the  emotional  and  medical  aspects  of  the 
disorder  and  your  reactions  to  it. 

I  wonder  if  we  could  touch  just  a  bit  on  your  professional  or  occu- 
pational background — how  the  syndrome  has  affected  that,  what 
kind  of  insurance  coverage  you  have  and  who  pays  for  the  costs  of 
your  medical  care. 

We  know,  Mr.  Ferrara,  that  you  are  at  NIH.  But  I  wonder,  Mr. 
Lyon  and  Mr.  Callen,  how  you  and  others  in  your  situation  are 
coping  with  this  particular  aspect  of  the  problem. 

Mr.  Callen.  Well,  at  the  time  I  was  initially  diagnosed,  I  was  a 
paralegal,  and  I  had  just  changed  jobs  3  months  prior  to  my  diag- 
nosis. I  have  about  $6,000  in  hospital  bills  that  the  insurance  com- 
pany has  declined  to  pay.  They  are  claiming  preexisting  condition. 
It  is  unclear  to  me  exactly  why:  whether  they  just  are  doing  that  to 
do  it — as  I  understand  some  insurance  companies  do — or  whether 
because  the  etiology  of  AIDS  is  so  mysterious,  they  are  going  to 
claim  that  I  had  the  syndrome  at  some  point  in  the  past.  I  am 
being  chased  by  the  hospitals  for  about  $6,000.  I  don't  know  how  I 
am  going  to  pay  it. 

Mr.  Weiss.  Mr.  Lyon? 

Mr.  Lyon.  I  work  for  a  large  leasing  company.  I  am  a  sales  repre- 
sentative. I  am  fortunate  in  the  fact  that  I  am  still  able  to  work. 
Many  of  the  patients,  many  of  my  friends  are  totally  unable  to 
work.  They  are  lucky  if  they  can  get  up  in  the  morning,  shower, 
and  go  on  about  their  daily  activities. 

As  far  as  the  costs,  to  date  my  medical  bills  have  run  in  excess  of 
$11,000.  And  I  am  not  on  any  treatment  whatsoever,  not  antibiot- 
ics, nothing.  It  is  all  diagnostic.  Fortunately,  my  insurance,  private 
medical  Insurance,  has  paid  approximately  80  percent  of  that.  That 
still  leaves  somewhere  in  the  neighborhood  of  $2,500,  $3,000  that  I 
am  responsible  for. 

Many  of  the  patients,  I  think  far,  far  more  of  the  patients,  do  not 
have  the  benefit  of  private  medical  insurance.  Many  are  on  disabil- 
ity. Many  are  now  seeking  social  security  which,  thank  God,  has 
become  available.  It  is,  however,  a  very  lengthy  time-consuming 
process.  So  much  of  the  costs  to  many  of  the  patients  is  thrown 
back  on  the  community  as  a  whole.  Many  people  are  just  indigent 
in  this  area. 

Mr.  Weiss.  Mr.  Ferrara? 

Mr.  Ferrara.  I  am  also  very  lucky  to  be  able  to  continue  work- 
ing. I  am  a  Federal  employee.  As  I  said  before,  I  belong  to  the 
GWHMO.  So  it  was — I  was  very  lucky  in  the  sense  that  either 
choice,  either  being  treated  by  the  HMO,  which  would  cover  all 
costs,  or  being  treated  at  NIH  would  be  for  free.  I  haven't  had  to 
pay  anything  up  to  this  point,  except  for  a  few  dollars  that  the 
HMO  didn't  cover. 

However,  I  think  part  of  the  problem  is  the  drugs  involved  are  so 
extremely  expensive,  the  experimental  drugs.  If  any  of  them  work, 
what  my  fear  is  is  that,  one,  it  is  going  to  be  too  expensive  to  be 


15 

widely  disseminated,  and  two,  the  experimental  status  of  the  drugs 
may  cause  insurance  companies  to  avoid  paying  for  them. 

Mr.  Weiss.  Has  anyone  at  NIH  indicated  to  you  what  your  costs 
would  be  for  the  treatment  and  medication  if  in  fact  you  were  able 
to  and  had  to  secure  care  through  private  sources? 

Mr.  Ferrara.  If  I  had  to  pay  for  the  drugs  I  receive  at  NIH,  at 
this  point — I  am  not  sure  about  this,  but  from  indications  that  I 
received,  the  cost  of  the  drugs  would  have  already  exceeded  half  a 
million  dollars. 

Mr.  Weiss.  Because  of  the  experimental  nature? 

Mr.  Ferrara.  Because  of  the  experimental  nature,  and  because 
the  drugs  very  often  at  this  point  cannot  be  genetically  engineered 
through  the  recombinant  DNA  method  which  is  cheaper  than  cre- 
ating them  by  essentially  having  all  these  blood  cells  and  cooking 
up  the  drug  and  letting  the  cells  create  the  drug  themselves.  So 
that  the  processes  to  create  these  drugs  now  are  extremely  expen- 
sive. 

Mr.  Callen.  I  think  one  can  anticipate  this  problem  of  experi- 
mental treatment  as  being  rejected  for  insurance  coverage.  I  know 
of  one  instance  where  a  friend  of  mine  went  for  plasmapheresis. 
His  insurance  declined  to  cover  that  with  the  justification  that  any 
treatment  for  this  disease  is  experimental  because  it  is  thought  to 
be  new.  So  there  are  no  treatments  of  any  proven  efficacy. 

I  think  we  can  anticipate  that  increasingly  insurance  companies 
are  going  to  decline  paying  for  any  treatment  with  the  justification 
that  it  is  all  experimental. 

Mr.  Weiss.  Given  the  parameters  of  our  hearing  and  the  time- 
frame in  which  we  are  operating,  that  completes  the  questions  that 
we  have  specifically  directed  toward  you. 

However,  I  don't  want  you  to  go  without  giving  each  of  you  the 
opportunity  to  fill  in  whatever  gaps  you  think  we  have  left.  If  there 
is  anything  that  you  want  this  committee  or  the  Congress  or  the 
American  people  to  know  about  AIDS  generally  or  a  particular  sit- 
uation, now  is  the  time  to  do  it.  Any  and  all  of  you  are  welcome  at 
this  point  to  make  closing  comments. 

Mr.  Lyon? 

Mr.  Lyon.  I  came  here  today  with  the  hope  that  this  subcommit- 
tee would  be  able  to  do  everything  possible  to  halt  the  spread  of 
this  disease.  AIDS  has  been  called  the  number  one  health  priority 
of  the  Nation.  It  certainly  is  my  No.  1  priority. 

I  came  here  today  with  the  hope  that  this  administration  would 
do  everything  possible,  make  every  resource  available — there  is  no 
reason  this  disease  cannot  be  conquered.  We  do  not  need  infighting, 
this  is  not  a  political  issue.  This  is  a  health  issue.  This  is  not  a  gay 
issue.  This  is  a  human  issue.  And  I  do  not  intend  to  be  defeated  by 
it.  I  came  here  today  in  the  hope  that  my  epitaph  would  not  read 
that  I  died  of  redtape. 

Mr.  Weiss.  Thank  you,  Mr.  Lyon. 

Mr.  Ferrara? 

Mr.  Ferrara.  I  think  I  would  just  like  to  say  that  there  is  prob- 
ably a  limit  to  how  much  money  the  research  community  can 
spend  on  research  for  the  disease.  I  think  there  are  just  so  many 
minds  that  can  go  around  and  do  so  many  experiments  and  spend 
so  much  money  to  try  to  find  a  cause,  a  cure,  or  a  control. 


16 

Beyond  research,  I  think  if  more  funds  are  to  be  made  available, 
a  place  where  they  can  do  a  lot  of  good  is  in  screening  programs — 
moneys  given  directly  to  the  gay  community  or  organizations 
within  the  gay  community  that  can  set  up  this  sort  of  thing, 
screening  programs,  to  try  and  find  out  just  how  many  people 
there  are  out  there  with  the  disease,  and  in  that  way  halt  the 
spread  of  the  disease. 

Mr.  Weiss.  Thank  you. 

Mr.  Callen? 

Mr.  Callen.  Well,  as  a  person  with  AIDS,  I  suffer  in  two  basic 
ways.  I  suffer  from  the  disease  itself,  and  I  suffer  from  the  stigma 
attached  to  being  diagnosed  with  this  disease.  The  end  to  both  as- 
pects of  this  suffering  will  come  only  if  the  vast  resources  of  the 
Federal  Government  are  turned  on  this  problem. 

We  need  answers  to  the  pressing  questions  of  cause,  cure,  and 
contagion.  And  so  the  bottom  line  is,  as  it  almost  always  is,  money. 
But  in  order  to  make  that  money  accomplish  something,  it  has  to 
be  well  spent.  And  I  think  that  one  of  the  things  that  is  encourag- 
ing to  me  about  this  committee  is  that  you  have  requested  access  to 
information  from  the  governmental  agencies  dealing  with  this 
problem. 

I  have  yet  to  see  a  comprehensive  plan  of  attack  emerge  from  the 
Government.  What  do  they  plan  to  do,  in  what  order?  Is  there  a 
master  plan  for  research  which  is  guiding  their  funding  requests? 
Are  they  developing  an  animal  model?  What  treatment  options  are 
being  pursued?  Which  have  been  discarded?  Why? 

So  the  first  priority  is  money.  The  second  is  that  the  money  be 
well  spent,  and  that  will  require  that  there  be  a  very  clear  master 
plan.  There  needs  to  be  some  sort  of  accountability,  which  is  what 
this  committee  is  all  about. 

I  would  also  like  to  speak  briefly  to  the  issue  of  confidentiality, 
which  is  beginning  to  be  mentioned  more  frequently  in  the  context 
of  AIDS  research,  and  to  clarify,  because  I  think  that  the  issue  is 
often  misunderstood. 

The  issue  of  confidentiality  is  really  two  issues.  As  you  know,  the 
information  being  collected  by  the  Centers  for  Disease  Control  in- 
volves basically  very  sensitive  personal  information.  So  there  exists 
the  potential  for  the  political  abuse  of  information  collected  in  the 
context  of  surveillance. 

But  the  other  more  important  issue  of  confidentiality,  as  I  see  it, 
is  that  we  need  to  remove  any  and  all  obstacles  to  collecting  accu- 
rate information.  And  the  basic  scenario  is  this:  A  representative  of 
the  Federal  Government,  a  CDC  representative,  shows  up  at  the 
bed  of  a  person  who  has  just  been  diagnosed  with  a  life-threatening 
illness,  and  asks  that  person  to  admit  to  illegal  acts — for  example, 
drug  abuse,  sexual  acts  which  are  illegal  in  most  States,  acts  of 
prostitution.  Assuming  for  a  moment  that  those  questions  are  nec- 
essary to  elucidate  the  etiology  of  this  disease,  one  needs  to  create 
a  situation  where  patients  are  likely  to  give  truthful  responses  to 
be  forthcoming  with  detailed  information. 

And  so  the  issue  of  confidentiality,  as  I  see  it,  is  simply  reassur- 
ing communities  which,  as  far  as  I  can  tell,  have  no  reason  to  trust 
the  Government  blindly.  We  need  to  be  reassured  that  the  confi- 
dentiality of  this  very  sensitive  information  is  being  protected.  So  I 


17 

view  whatever  measures  have  to  be  taken  to  insure  confidentiality 
as  justified  in  a  cost-benefit  sense. 

If  you  can  assure  people  that  the  sensitive  information  being  col- 
lected is  being  protected — that  it  cannot  be  used  against  them — you 
will  encourage  them  to  give  more  truthful  responses;  and  truthful 
responses  in  turn  will  be  more  useful  to  researchers  in  terms  of  re- 
solving the  mystery  of  AIDS. 

So  to  reiterate,  money;  money  that  is  well  spent;  and  sensitivity 
to  the  issues  of  confidentiality.  I  guess  that  is  basically  what  I 
would  like  to  see. 

Mr.  Weiss.  Thank  you  very  much. 

I  want  to  thank  all  of  you  on  behalf  of  the  subcommittee,  the  full 
committee,  and  the  House. 

As  Mr.  Craig  indicated  before,  we  have  nothing  but  admiration 
for  your  determination,  perseverance,  and  courage,  both  in  fighting 
the  syndrome  itself  and  in  sharing  your  knowledge  and  experience 
with  the  rest  of  us. 

Thank  you  all  very,  very  much. 

Our  second  panel  consists  of  representatives  from  affected  com- 
munities: Virginia  Apuzzo,  executive  director,  National  Gay  Task 
Force;  Stephen  Endean,  executive  director.  Gay  Rights  National 
Lobby;  Dr.  Jean-Claude  Compas,  vice  president,  Haitian  Medical 
Association  Abroad,  and  Alan  Brownstein,  executive  director,  Na- 
tional Hemophilia  Foundation. 

We  will  hold  off  questions  until  the  witnesses  have  all  completed 
their  testimony.  I  know  that  you  all  have  prepared  written  state- 
ments, and  those  will  be  entered  into  the  record  without  objection, 
in  their  entirety.  If  you  wish  to  highlight  or  summarize  your  re- 
marks, please  feel  free  to  do  so. 

Again,  if  you  will  stand  for  the  affirmation. 

Do  you  affirm  that  you  will  tell  the  truth,  the  whole  truth,  and 
nothing  but  the  truth? 

Ms.  Apuzzo.  I  do. 

Mr.  Endean.  I  do. 

Dr.  Compas.  I  do. 

Mr.  Brownstein.  I  do. 

Mr.  Weiss.  We  will  begin  with  Ms.  Apuzzo,  then  Mr.  Endean,  Dr. 
Compas,  and  Mr.  Brownstein. 

STATEMENT  OF  VIRGINIA  M.  APUZZO,  EXECUTIVE  DIRECTOR, 
NATIONAL  GAY  TASK  FORCE 

Ms.  Apuzzo.  My  name  is  Virginia  Apuzzo. 

I  am  grateful  for  the  opportunity  to  testify  today.  But  I  am  sad- 
dened and,  yes,  I  am  angered  by  the  necessity,  a  necessity  brought 
on  by  what  we  perceive  to  be  the  Federal  Government's  policy  of 
gestures  and  not  actions. 

Quite  simply,  from  our  point  of  view,  Mr.  Chairman,  the  Federal 
Government's  response  to  the  AIDS  epidemic  reveals  that  the 
health  care  system  of  the  wealthiest  country  in  the  world  is  not 
equipped  to  meet  the  needs  of  its  citizens  in  an  emergency,  howev- 
er brief  or  extended  that  emergency  might  be. 

Further,  if  we  take  a  look  at  the  Federal  Government's  response 
to  the  AIDS  crisis  it  leads  unavoidably  to  the  conclusion  that 


18 

within  this  administration,  there  is  a  sharp  contrast  between  the 
rhetoric  of  concern  and  the  reaUty  of  response.  That  failure  is  un- 
derscored when  one  looks  at  the  record  of  the  lesbian  and  gay  com- 
munity in  filling  the  gap. 

I  was  pleased  to  hear  the  number  of  questions  posed  about  this. 
Perhaps  I  can  add  additional  specifics  to  the  extent  to  which  the 
gay  and  lesbian  community  has  indeed  responded. 

The  National  Gay  Task  Force  survey  of  community  voluntary  or- 
ganizations found  that  $2.3  million  was  budgeted  for  AIDS  projects 
in  1983  for  the  gay  and  lesbian  community,  with  another  $6.8  mil- 
lion being  projected  and  budgeted  for  1984  in  the  gay  and  lesbian 
community.  These  figures  do  not  include  local  and  State  govern- 
ment grants  to  these  groups,  nor  do  they  include  the  value  of  hun- 
dreds of  thousands  of  voluntary  hours  in  these  programs. 

Indeed,  the  National  Gay  Task  Force  last  October  opened  up  a 
crisis  line,  an  800  number,  that  would  enable  members  of  the  com- 
munity and  the  public  at  large  to  seek  information  about  AIDS.  We 
are  getting  in  excess  of  3,000  calls  a  day  that  we  cannot  respond  to. 
And  we  are  open  8  hours  a  day,  5  days  a  week,  until  9  o'clock  at 
night,  so  that  we  can  take  care  of  the  concerns  and  the  questions 
from  the  Western  part  of  the  country. 

Our  community,  is  proud  of  this  response.  But  our  experience  in 
the  front  lines  tells  us  that  we  cannot  be  expected  to  solve  this 
crisis  on  our  own.  Our  Government  must  respond  to  our  needs. 

We  have  found  the  administration  has  been  out  of  touch  with  the 
magnitude  of  the  crisis.  It  has  been  following,  not  leading  the  gen- 
eral public  and  the  affected  communities.  In  hearings  before  Con- 
gressman Waxman's  subcommittee.  Dr.  Brandt  admitted  that  the 
fiscal  1984  budget  which  showed  less  money  for  AIDS  work  than  in 
1983  was  "prepared  before  we  understood  in  fact  how  much  money 
it  would  require." 

That  belated  recognition  is  shocking  enough.  What  is  inconceiv- 
able is  that  the  administration  has  yet  to  adjust  its  1984  budget  re- 
quest. 

More  than  2  years  after  this  medical  crisis  became  generally  rec- 
ognized, the  administration  still  has  not  presented  a  comprehensive 
plan  of  attack.  Mr.  Callen  said  it  as  eloquently  as  it  could  be  said. 

More  than  2  months  ago  I  wrote  a  letter  to  Secretary  Heckler 
asking  her  to  set  forth  just  such  a  plan.  She  has  been  unable  or 
unwilling  to  do  so. 

My  written  testimony  submitted  to  your  committee  details  the 
failures  of  the  Federal  Government's  response  in,  first,  setting  out 
requests  for  research  projects  to  study  AIDS,  second,  in  funding 
those  projects  which  pass  its  review  programs,  and  third,  in  even 
identifying  such  crucial  study  areas  as  the  cause  or  etiology  of 
AIDS,  now  set  for  funding  for  the  first  time,  Mr.  Chairman,  in  Oc- 
tober of  1983. 

When  you  look  at  how  NIH  is  handling  the  funding  of  research, 
what  is  driven  home  time  and  time  again  is  that  we  lack  the  re- 
sources to  do  the  job,  even  if  you  accept  the  administration's  more 
limited  view  of  what  needs  to  be  done. 

In  point  of  fact,  there  are  now  more  requests  for  applications  out 
than  money  appropriated  to  fund  them.  Even  the  NIH  bureaucracy 
recognizes  a  greater  need  than  the  budget  cutters  at  0MB.  $9.6 


19 


million  was  appropriated  for  NIH  for  basic  research  on  AIDS,  in 
tiscal  iy8d.  State  and  local  governments  along  with  the  private 
sector  are  coming  close  to  matching  that  figure  on  their  own  That 
is  a  very  sad  commentary  on  the  Federal  Government's  response 
and  what  we  have  come  to  expect  as  an  appropriate  response 

4.-  !^u^^l^  ¥^°^  ^^^^  ^^^  standpoint  that  the  Government's 
timetable  has  been  simply  unacceptable.  We  count  not  in  months 
or  weeks  or  in  days,  sir;  we  count  in  lives.  We  count  in  terms  of 
lives  that  may  very  well  be  lost  as  a  result  of  a  lethargic  response 
Because  of  its  mysterious  nature,  and  I  submit,  because  of  the 
groups  associated  with  it,  AIDS  has  generated  something  just  short 
of  a  public  panic.  A  good  deal  of  that  panic  has  been  fostered  by 
homophobes  bent  on  turning  a  public  health  crisis  into  an  opportu- 
nity to  attack  the  gay  and  lesbian  community. 

Recently  we  could  not  ask  for  a  more  forthright  response  in  the 
personal  statements  of  PHS  officials  like  Dr.  Brandt,  their  sincere 
and  willing  effort  to  be  out  front  in  reassuring  the  general  public 
about  unwarrantea  concerns  of  casual  contact  with  persons  with 
AlDb  and  members  of  high  risk  groups.  Unfortunately,  the  pro- 
grammatic efforts  backing  up  those  statements  seem  to  be  very 
weak  leaving  us  open  to  the  calculated  abuses  that  we  have  wit- 
nessed m  this  community. 

u  '^  jf  hysteria  created  by  those  ill-intentioned  people  cannot  be 
handled  by  the  limited  public  health  education  efforts  the  Federal 
Government  has  put  into  effect;  leaving  us  again  very  vulnerable. 
Ihe  federal  AIDS  hotline,  which  started  with  only  three  lines  and 
now  fortunately  has  added  five  more,  is  still  capable  of  handling 
only  a  fraction  of  the  10,000  calls  that  attempt  to  get  through  to  it 
daily,  and  none  of  the  calls  after  5  p.m.  eastern  daylight  savings 
time,  when  the  hotline  is  shut  down. 

Federal  public  education  efforts  such  as  there  are  concentrate  on 
the  general  public.  That  is  good.  But  education  about  AIDS  must 
also  reach  affected  groups,  persons  with  AIDS,  and  those  who  work 
m  very  close  contact  with  persons  who  are  from  high-risk  groups 
We  have  heard  much  about  health  care  workers,  about  morti- 
cians, police  officers,  and  others  who  are  fearful  of  close  contact 
Most  of  those  fears  are  unjustified.  But  it  is  hard  to  blame  people 
who  have  not  received  clear-cut  guidelines  and  concrete  informa- 
tion to  assure  them.  The  Public  Health  Service  should  be  taking  a 
much  stronger,  a  vitally  needed  lead  role  in  this  area. 

Perhaps  the  one  issue  that  is  most  inciting  of  hysteria  has  been 
concern  about  our  Nation's  blood  supply.  Let  me  restate  the  gay 
community  s  position  on  the  issue  of  blood  donations.  At  every  pos- 
sible forum,  we  have  urged  that  those  in  our  community  who  feel 
they  might  be  at  risk  to  AIDS  or  feel  unwell  to  refrain  from  donat- 
ing blood  We  have  felt  that  that  is  the  responsible  position.  Recent 
reports  about  dangerously  low  blood  supplies  directly  result  from 
A  T^o  .^^®^"^®,",*'^  failure  to  investigate  the  transmissibility  of 
AIDS  through  blood,  to  develop  a  marker  for  AIDS  in  blood,  to  test 
surrogate  markers,  or  to  study  the  safety  of  the  blood  supply  and 
giving  blood.  ^  -^ 

The  negative  effect  of  this  has  been  that  blood  donations  seem  to 

?,f ^®  !t^o".^^^?.^  ^^^^  l^^^s  by  virtue  of  the  lack  of  blood  supply 
than  AIDS  itself.  ^  •' 


20 


From  Secretary  Heckler  on  down,  the  Health  and  Human  Serv- 
ices Department  has  of  late  done  an  excellent  public  relations  job, 
reassuring  the  public  that  there  are  not  risks  in  giving  blood,  and 
that  the  dangers  of  receiving  AIDS  from  a  transfusion  are  mmimai 
at  worst.  But  where  were  they,  sir,  a  year  ago  when  this  issue  tirst 
surfaced  and  the  overreaction  could  have  been  addressed?  And  why 
have  they  still  not  done  the  research  needed  to  garner  scientific 
support  for  that  position,  a  position  that  the  public  wants  to  be  as- 
sured about?  .     ,  „  4.     ..u  f„ 

In  another  vital  area,  the  particular  concerns  of  groups  at  risk  to 
AIDS  are  reflected  most  clearly  in  the  issue  of  confidentiality,  an 
issue  I  know  that  is  quite  controversial  and  of  considerable  impor- 
tance to  you,  Mr.  Chairman.  . ,      .    ,  i 

This  issue  has  been  used  in  what  we  consider  to  be  unscrupulous 
ways,  to  paint  the  gay  and  lesbian  community  as  irresponsible  and 
unwilling  to  cooperate  with  CDC  in  the  fight  against  AlDb. 

At  the  very  same  time,  we  see  that  CDC  has  failed  utterly  to  rec- 
ognize the  most  basic  patient  rights  of  confidentiality  and  privacy. 
It  is  used  as  an  excuse,  sir,  to  deny  this  committee  access  to  infor- 
mation vital  to  the  legitimate  performance  of  the  oversight  func- 

I  want  to  state  unequivocally  our  position  on  confidentiality,  and 
to  offer  some  legislative  proposals  to  provide  strong  and  lasting 
protection  for  the  privacy  and  confidentiality  of  persons  with  AlDb. 
When  we  ask  what  steps  have  been  taken  to  protect  the  confi- 
dentiality of  the  information  CDC  has  already  gathered,  we  are 
told  I  have  been  personally  told  "Trust  us."  But  trust  requires  a 
history  of  credibility,  and  that  is  conspicuously  lacking. 

Some  of  the  most  basic  social  science  research  precautions  for 
protecting  confidentiality  have  not  been  observed. 

Now,  let  me  make  one  statement  very  clear.  No  community 
could  be  more  concerned  about  hearing  all  the  necessary  informa- 
tion to  find  an  answer  to  AIDS.  It  is  our  community  that  is  being 
ravaged  by  this  disease.  We  can  and  we  must  legitimately  ask 
whether  collecting  full  identification  information  along  with  sexual 
histories  is  an  essential  ingredient  to  epidemiological  research. 

The  National  Gay  Task  Force  and  LAMDA  Legal  Defense  and 
Education  Fund  are  proposing  today  that  the  Congress  adopt  legis- 
lation to  extend  to  all  persons  who  are  part  of  a  federally-funded 
research  or  surveillance  program  the  same  conMentiality  protec- 
tion others  already  have  under  Federal  law.  The  Drug  Abuse  Office 
and  Treatment  Act  of  1972,  for  example,  provides  that  medical 
records  may  be  disclosed  "only  in  accordance  with  the  prior  writ- 
ten consent  of  the  patient,"  except  in  rare  cases. 

Similar  language  covers  alcohol  abuse  programs. 

We  propose  that  Congress  enact  legislation  extending  this  protec- 
tion to  the  privacy  of  medical  surveillance  and  research  documents 
to  persons  with  AIDS,  both  in  Federal  agencies  and  those  local  ju- 
risdictions receiving  Federal  funds. 

With  such  legislation  in  hand,  the  concerns  of  our  community 
would  be  addressed,  and  another  precedent  for  privacy  in  patient 
rights  would  be  established.  .     •    j 

Mr  Chairman,  there  is  a  conclusion  that  my  community  is  draw- 
ing—and  the  conclusion  is  that  who  is  being  struck  with  this  dis- 


21 

ease  is  part  of  why  we  haven't  found  an  answer  to  that  disease.  We 
live  with  this  condition  in  our  lives  every  moment. 

It  is  vital  that  you,  sir,  that  your  committee,  that  the  Congress 
understand  basic  aspects  of  our  lives.  We  are  part  of  a  society  that 
has  for  the  most  part  treated  us  as  outlaws.  We  have  lived  as  out- 
laws in  our  own  society.  To  ask  for  trust  without  guidelines,  to  ask 
that  we  endure  what  appears  to  be  an  interminable  time  lapse  be- 
tween the  identification  of  a  problem  and  the  pursuit  of  a  resolu- 
tion of  that  problem  is  asking,  too  much  of  this  community. 

Thank  you. 

Mr.  Weiss.  Thank  you  very  much. 

[The  prepared  statement  of  Ms.  Apuzzo  follows:] 


22 


hGTF 


National  GaV  Task  Force       so  FIWi  Avenue  •  New  York,  ^4ew  Vof*  10011   •  (212)  741-5800 

'  Washington  Office:  2335  18«h  SL,  N.W.  •  Washington.  D.C.  20009  •  (202)  332-6483 


TESTIMONY 
VIRGINIA  M.  APUZZO 
Executive  Director 


August  1,  1983 
Subconwittee  on  Intergovernmental  Relations  &  Human  Resources 
U.S.  House  of  Representatives 


Member:  Leadership  Conference  on  Civil  Rights 


23 


Mr.  Chairperson,  I  want  to  thank  you  for  calling  these  hearings  today. 
They  address  an  issue  critical  for  millions  of  Americans.  We  must  give  hope 
to  those  who  are  worried  about  Acquired  Immune  Deficiency  Syndrome--hope  that 
the  government  will  finally  respond  adequately  to  this  crisis. 

Mr.  Chairperson,  what  you  will  learn  from  today's  hearings  is  startling. 
The  federal  government's  response  to  the  AIDS  epidemic  has  demonstrated  that 
the  health  care  system  of  the  wealthiest  country  in  the  world  is,  quite 
simply,  not  equipped  to  meet  the  medical  needs  of  its  citizens  in  an  emergency 
or  an  extended  crisis.   That  should  be  a  source  of  deep  concern  to  all 
Americans'-not  just  the  20  million  gay  and  lesbian  Americans  the  National 
Gay  Task  Force  represents. 

Before  going  into  detail,  let  me  point  out  some  of  the  more  shocking 
instances  of  the  federal  government  conducting  business  as  usual--and  thereby 
threatening  the  well-being  of  Its  citizens. 

•  Two  years  after  the  federal  government,  belatedly,  recognized  that  AIDS 
was  indeed  a  public  health  problem,  the  National  Institutes  of  Health  have 
still  not  funded  research  into  the  et iology--the  cause— of  AIDS.   The  first 
research  to  be  funded  begins  in  October  I983.   This  delay  is  unconscionable. 

It  does  not  take  a  medical  degree  to  realize  that  unless  you  are  looking  into 
the  cause  of  a  disease,  you  aren't  likely  to  find  a  cure.  The  process  of 
funding  NIH  research  is  generally  too  slow,  too  cumbersome,  and  the  mechanism 
for  setting  priorities  is  obviously  askew. 

•  The  Centers  for  Disease  Control  have  been  forced  to  beg,  borrow,  and 
steal  from  other  vital  programs  to  support  their  work  on  AIDS.   The  medical 
detectives  who  Secretary  Heckler  says  have  adequate  funding  to  do  their  job 
have  shut  down  their  hepatitis  control  program  and  cut  back  on  VD  control  and 
childhood  immunization  to  divert  resources  to  AIDS  work  that  is  Inadequate  at 
best.   Surveillance  activities  are  minimal  and  not  providing  the  basic  Informati 
we  need.   And  support  services  to  local  governments  are  only  beginning  to 

come  forth  well  into  the  crisis. 

•  We  are  all  painfully  aware  of  the  hysteria  about  AIDS  that  is  sweeping 
many  parts  of  the  country.   The  federal  government  has  responded  with  public 
education  efforts  that,  while  sincere  and  responsible,  were  initiated  after 
the  hysteria  struck.   And  even  these  efforts  are  woefully  underfunded,  and 
lacking  in  personnel  and  resources. 

NGTF-1 


24 


y  •  Perhaps  the  one  issue  that  has  most  incited  this  hysteria  has  been  the 
concern  about  our  nation's  blood  supply.   Unwarranted  fears  about  the  safety  of 
giving  and  receiving  blood  could  have  been  avoided  had  the  government  responded 
properly.   The  Public  Health  Service  has  recently  done  a  good  job  of  reassuring 
the  public  about  the  blood  supply--but  it  has  not  initiated  basic  research 
regarding  the  safety  of  blood,  and  whether  screening  out  high-risk  groups  is 
indeed  necessary.   In  the  meantime,  because  of  diminished  supplies,  the  lives 
of  all  Americans  are  being  placed  in  jeopardy. 

•  This  public  health  crisis  has  struck  miioritics  who  have  traditionally 
been  the  victims  of  officially  sanctioned  discrimination,  and  democracy  has  not 
been  applied  in  the  policy-making  or  decision-making  process.   Affected  groups 
like  gays  and  Haitians  have  not  been  part  of  the  process.   In  the  health  care 
system  generally,  patients'  needs  are  not  necessarily  being  addressed — though 
they  are  the  ones  with  the  most  at  stake. 

•  The  particular  concerns  of  groups  at  risk  to  AIDS  are  reflected  most 
clearly  in  the  issue  of  conf ident ial i ty--an  issue  I  know  is  quite  controversial 
and  of  considerable  importance  to  you,  Mr.  Chairperson.   The  government  agencies 
with  which  we  have  been  dealing,  most  particularly  the  Centers  for  Disease 
Control,  have  failed  miserably  to  recognize  the  most  basic  rights  of  patients 
and  research  subjects:  that  of  confidentiality  and  privacy.   This  seeming 
inability  to  address  the  issue  forthrightly  and  sensitively  has  undercut  the 
effectiveness  of  what  little  epidemiologic  research  the  government  is  doing — 
because  those  most  affected  simply  don't  trust  the  government  to  protect  their 
rights.   The  confidentiality  issue  can  and  must  be  addressed  in  such  a  way 

that  the  rights  of  patients  are  protected  without  compromising  larger  public 
health  needs. 

•  The  tremendous  outpouring  of  support  for  voluntary  efforts  within  the 
gay/lesbian  community  has  been  in  sharp  contrast  to  the  federal  government's 
response.  Existing  organizations  are   expanding  their  work  to  include  issues 
related  to  AIDS,  and  new  service  groups  are  being  formed  to  meet  the  crisis. 

An  NGTF  survey  of  voluntary  organizations  in  the  gay/lesbian  community 
found  that  in  I983,  more  than  $2.5  million  has  been  budgeted,  with  another 
$6.8  million  projected  for  198'*.   These  figures  do  not  include  local  and 
state  government  grants  to  these  groups,  nor  do  they  include  the  value  of 
millions  of  volunteer  hours  that  sustain  these  organizations. 

NGTF-2 


25 


This  work  is  a  source  of  tremendous  pride  for  my  community.   It  is  banding 
together  as  a  community  should.   But  we  cannot  be  expected  to  do  the  job  alone. 
The  government  must  help.   It  must  be  part  of  the  solution  as  well.   At  the 
federal  level  there  has  been  no  effort  to  include  these  voluntary  organizations 
in  planning  and  coordinating.   The  PHS  sees  fit  to  hold  special  briefings  for 
science  editors,  but  none  for  those  doing  the  most  important  science  work 
during  this  crisis.   This  administration  claims  to  be  committed  to  rekindling 
the  volunteer  spirit  in  America.   My  community  has  responded  to  an  unprecedented 
degree.   Where  is  the  federal  government's  recognition  of  and  support  for 
these  efforts? 

y;   •  Mr.  Chairperson,  there  is  a  conclusion  we  can  draw  about  this  government's 
response  to  medical  crises  that  will  make  some  people  very  uncomfortable. 
The  record  on  AIDS  shows--and  I  submit  would  prove  the  same  in  other  instances- 
that  the  government's  slow  response  on  AIDS  is  directly  related  to  who  is 
affected  by  this  disease  as  much  as  what  the  disease  is.   The  groups  most 
affected--gay  men,  Haitians,  IV  drug  users--are  traditionally  victims  of 
discrimination,  often  officially  sanctioned.   And  among  those  who  have  AIDS,  over 
AO  percent  are  persons  of  color.   As  the  author  of  the  national  gay/Iesblan 
rights  bill,  Mr.  Chairperson,  you  are    fully  aware  of  the  continuing  official  and 
unofficial  discrimination  facing  the  gay/lesbian  community.   If  one  Is  black 
and  gay,  or  black  and  an  immigrant  who  doesn't  speak  Engllsh--the  discrimination 
is  even  greater.   A  certain  lack  of  speed  In  the  government's  response  Is 

apparent,  especially  in  comparison  to  that  for  Legionnaire's  disease,  which 

affected  a  very  different  sociological  cross-section.   The  Implications  of 
this  are  shocking,  but  unavo Idable--and  unacceptable.   Because  they  are  gay, 

Haitian,  or  IV  drug  users,  these  people's  lives  are  thought  to  be  expendable. 

The  lesson  to  be  learned  is  that  If  you  are  part  of  a  minority,  don't 

expect  the  government  to  respond  to  your  needs  without  a  fight.   Institutional 

neglect  and  resistance  are  more  likely  to  be  the  norm. 

A  detailed  look  at  the  federal  government's  response  to  the  AIDS  crisis 

leads  to  the  unavoidable  conclusion  that  in  this  Administration,  there  is  a 

sharp  contrast  between  the  rhetoric  of  concern  and  the  reality  of  response. 

The  Administration  has  been  out  of  touch  with  the  magnitude  of  this  crisis. 

It  has  been  following,  not  leading,  the  general  public  and  the  affected  communities. 

In  hearings  before  Cong.  Waxman ' s  subcommittee.  Dr.  Brandt  admitted  that  the 

NGTF-3 


26 


fiscal  year  ISS^i  budget  request--wh!ch  showed  less  money  for  AIDS  work  at  CDC 
than  in  1983--was  prepared  "before  we  understood  in  fact  how  much  money  it  would 
require."  That  belated  recognition  is  shocking  enough  from  an  agency  with  a 
mandate  to  protect  the  public  health;  what  Is  inconceivable  is  that  the 
Administration  has  yet  to  adjust  its  fiscal  year  1984  request  to  reflect  its 
newfound  wisdom. 

More  than  two  years  after  this  medical  crisis  became  generally  recognized, 
the  Administration  still  has  not  presented  to  the  public  a  comprehensive  plan 
of  attack.   More  than  two  months  ago,  I  wrote  Secretary  Heckler,  asking  her 
to  set  forth  just  such  a  plan.   She  has  been  unable  or  unwilling  to  do  so--even 
after  declaring  AIDS  to  be  the  nation's  number  one  health  priority.   CDC,  NIH, 
and  other  agencies  are  engaged  in  detective  work  that  Is  uncoordinated  and 
unplanned.   Without  a  centrally  devised  approach  to  research,  public  and 
private  efforts  cannot  be  coordinated  and  a  clearcut  assessment  of  what  needs 
to  be  done  and  how  much  It  costs  cannot  be  made.   As  long  as  a  comprehensive 
plan  is  not  forthcoming,  the  public  will  legitimately  wonder  and  worry  how 
seriously  the  Administration  is  taking  this  issue. 

An  understanding  of  the  magnitude  of  the  AIDS  problem  is  essential  to 
developing  a  policy.   The  CDC  is  charged  with  surveillance  which  could  give 
us  some  sense  of  the  scope  of  the  epidemic.   Yet,  after  all  this  time,  we 
still  don't  have  accurate  statistics  on  the  number  of  cases,  partly  because 
CDC's  programs  suffer  from  inadequate  staffing  and  insufficient  funding. 
Dr.  Richard  Selig  of  CDC  told  USA  Today  (July  21,  1983)  that  CDC  statistics 
probably  represented  only  one-half  of  the  actual  number  of  AIDS  cases. 

In  1981,  the  same  year  the  AIDS  epidemic  was  beginning  to  get  attention, 
CDC's  budget  was  slashed  by  20  percent.   It  is  understandable,  therefore,  though 
unacceptable,  that  CDC  has  had  difficulties  meeting  its  responsibilities  in 
thi  s  cr isi  s. 

To  compensate  for  insufficient  funds,  CDC  has  diverted  resources  from 
existing  programs,  thus  jeopardizing  important  medical  work  in  other  areas. 
The  hepatitis  control  program  has  been  shut  down,  and  the  venereal  disease 
control  and  childhood  immunization  programs  have  suffered.   These  are  ongoing 
concerns,  not  luxuries  that  can  be  cut  back  when  a  more  pressing  crisis 
arrives  on  the  scene. 

The  problem  of  diverting  resources  also  arose  when  the  Administration  sought 
to  reprogram  $12  million  for  AIDS  work  throughout  the  Public  Health  Service, 
rather  than  seek  the  supplemental  budget  preferred  by  Congress.   There  is  no 

NGTF-I* 


27 


excuse  for  the  United  States  government,  faced  with  medical  emergencies, 

to  force  choices  between  groups  who  need  help.   The  protection  of  the  public 

health  should  not  be  a  zero  sum  game. 

Here  are    some  more  examples  of  insufficient  resources  undermining  CDC ' s 
efforts: 

•  It  was  only  two  months  ago  that  CDC  was  able  to  send  public  health 
advisors  to  San  Francisco,  Los  Angeles,  and  Miami  to  assist  with  AIDS  studies. 
New  York  City  wa5  assigned  an  advisor  just  a  few  months  earlier.   It  had  been 
well  known  for  some  time  that  these  cities  were  the  most  affected.   (And  the 
CDC  still  has  not  provided  local  jurisdictions  with  special  technical 
assistance  in  public  education  as  they  have  with  other  diseases.) 

•  Tracing  of  cases--gett ing  more  detailed  case  histories  and  medical 
information--is  important  to  the  epidemiologic  research  that  may  give  us  clues 
to  the  source  of  AIDS.   It  is  our  understanding  that  routine  risk  groups  are 
not  being  traced;  only  anomalies  are  being  studied  In  depth.   While  that  may 
provide  reassuring  information  to  quell  public  hysteria,  from  an  epidemiologic 
standpoint  It  Is  the  patterns  in  high-risk  groups  that  might  provide  us 

wl th  an  answer. 

•  Epidemiologic  work  is  further  hampered  by  Inconsistencies  In  reporting 
systems  about  AIDS.   Only  a  few  jurisdictions  hav-  made  AIDS  a  reportable 
disease.   With  no  consistent  national  policy  to  deal  with  information  gathering. 
It  will  remain  Impossible  to  have  accurate  statistics  on  how  quickly  this 
epidemic  is  growing. 

The  question  of  accurate  reporting  and  surveillance  Inevitably  raises 
the  issue  of  confidentiality.   This  Issue  has  been  used  in  unscrupulous  ways 
to  paint  the  gay/lesbian  community  as  Irresponsible  and  unwilling  to  cooperate 
with  the  CDC  In  the  fight  against  AIDS.   And  at  the  very  same  time,  our 
concerns--whIch  have  been  so  studiously  rejected  by  CDC--have  been  used  as 
an  excuse  to  deny  this  committee  access  to  information  vital  to  the  legitimate 
performance  of  Its  oversight  function. 

I  want  to  state  unequivocally  the  gay/lesbian  community's  position  on 
confidential  I ty--so  no  one  in  the  CDC  or  elsewhere  can  misunderstand  just  what 
will  and  won't  be  acceptable  to  us--and  also  to  offer  some  legislative  proposals 
to  take  this  issue  cut  of  the  hands  of  bureaucrats  and  provide  some  strong 
and  lasting  protection  for  the  privacy  and  confidentiality  of  persons  with  AIDS. 

NGTF-5 


28 


To  understand  my  community's  position  on  confidentiality,  the  position  of 
the  gay/)esbian  community  in  American  society  must  first  be  understood.   The 
gay/lesbian  community  is  a  disenfranchised  minority.   In  all  but  one  state  and 
the  District  of  Columbia,  you  can  still  lose  your  job  simply  because  you  are 
gay  or  lesbian.   In  half  the  states,  our  expressions  of  love  make  us  criminals. 
Many  jurisdictions  deny  us  the  right  to  raise  our  children  or  teach  those  of 
others.   The  federal  government  still  bars  us  from  military  service  and  employment 
in  key  sections  of  the  civil  service:  it  subjects  others  of  us  to  harassment  by 
investigations  I.ito  our  lifestyles.   Given  this  context,  you  can  better  understand 
why  there  is  suspicion  within  our  community  about  any  surveillance  activity 
that  can  place  our  names  and  sexual  orientation  together  in  a  government 
computer.   Yet,  that  is  what  the  CDC  is  blithely  asking  for. 

When  we  ask  what  steps  have  been  taken  to  protect  the  confidentiality  of  the 
information  the  CDC  has  already  gathered,  we  are    told,  "trust  us."   But  to  trust 
requires  a  history  of  cred ibi 1 i ty--and  that  Is  conspicuously  lacking.   Some  of 
the  most  basic  social  science  research  precautions  for  protecting  confidentiality 
have  not  been  observed . 

Now  let's  make  one  thing  unmistakably  clear:  no  community  could  be  more 
concerned  about  gathering  all  the  necessary  information  to  find  an  answer  to 
AIDS.   It  Is  our  community  that  is  being  ravaged  by  this  disease.   But  we  can 
legitimately  ask  whether  collecting  full  identification  Information  along 
wi  th  sexual  histories  Is  an  essential  ingredient  of  epidemiologic  research. 

There  are  two  purposes  for  collecting  Identification  Information:  to  avoid 
duplication  of  case  histories  and  to  be  able  to  make  follow-up  contacts. 
After  much  discussion  within  the  community,  with  groups  such  as  the  New  York 
AIDS  Network,  Persons  with  AIDS,  and  the  Lambda  Legal  Defense  and  Education 
Fund,  the  following  compromise  procedure  has  been  suggested:  initials  only, 
date  of  birch,  city  of  residence,  mother's  maiden  name,  and  attending  physician 
should  be  collected.   The  statistical  odds  of  all  that  information  being 
identical  are  quite  low.   The  possibility  of  follow-up  contact  is  assured 
through  the  attending  physician.   And  we  also  avoid  the  possibility  of  lists  of 
gay  men  falling  into  the  hands  of  the  wrong  people.   It  should  be  noted  that  a 
version  of  this  model  is  already  in  use  In  Washington,  D.C. 

With  the  glaring  exception  of  the  CDC,  this  approach  strikes  all  we  have 
dealt  with--from  public  health  officers  in  major  cities  to  medical  researchers-- 
as  reasonable.   Yet,  we  cannot  even  get  the  CDC  to  sit  down  with  us  and  negotiate 

NGTF-6 


29 


this  matter  in  a  professional  way.   But  the  CDC  and  all  others  must  understand: 
unless  and  until  these  concerns  about  confidentiality  are  resolved,  the  accurate 
reporting  and  epidemiologic  research  we  all  desire  will  be  incomplete  and 
rnaccurate--because  patients  and  physicians  with  legitimate  fears  about  how  this 
information  will  be  handled  will  resist  cooperating  with  CDC. 

The  procedures  outlined  above  provide  a  good  interim  model.   But  a  firmer 
basis  of  trust  ultimately  needs  to  be  established.   Therefore,  the  National 
Gay  Tasl<  Force  and  Lambda  Legal  Defense  and  Edjcaticn  Fund  are  proposing  today 
that  the  Congress  adopt  legislation  to  extend  to  all  persons  who  are  part  of  a 
federally  funded  research  or  surveillance  program  the  same  confidentiality 
protections  others  already  have  under  federal  law. 

The  Drug  Abuse  Office  and  Treatment  Act  of  1972  (21  U.S.C.  1175),  for  example, 
provides  that  medical  records  may  be  disclosed  "only  in  accordance  with  the 
prior  written  consent  of  the  patient,"  except  in  rare  emergencies.   Similar 
language  covers  alcohol  abuse  programs. 

We  propose  that  Congress  enact  legislation  extending  this  protection  of  the 
privacy  of  medical,  surveillance,  and  research  documents  both  in  federal  agencies 
and  those  local  jurisdictions  receiving  federal  funds.   Wi'-h  such  legislation 
in  hand,  the  concerns  of  our  community  would  be  addressed,  and  another  precedent 
for  privacy  and  patient  rights  would  be  established. 

Our  concerns  for  confidentiality,  Mr.  Chairperson,  do  not  in  any  way  diminish 
our  support  for  the  work  of  this  committee  and  its  vital  oversight  function. 
The  sudden  concerns  of  the  CDC  about  confidentiality  are  a  red  herring.   They 
are   an  excuse  to  deny  this  committee  access  to  CDC  files.   What  we  are  witnessing 
from  CDC  is  an  attempt  to  stonewal l--and  that  implies  that  CDC  has  something 
to  hide. 

In  their  dealings  with  the  gay/lesbian  community,  the  CDC  has  been  taken 
aback  that  we--the  consumers--mi ght  have  the  audacity  to  question  how  they 
carry  out  their  mandate.   That  mandate,  CDC  needs  to  be  reminded,  comes  from 
the  Congress  and  the  people.   It  is  for  us,  not  them,  to  determine  what  is  in 
our  best  interests. 

Given  the  performance  of  CDC  during  this  crisis,  oversight  by  this  committee 
Is  essential.   The  concerns  expressed  by  CDC  regarding  confidentiality  might 
be  taken  more  seriously  if  CDC  had  been  more  responsive  when  we  discussed  this 
issue  in  terms  of  their  surveillance  work.   Further,  the  fact  that  names  are 
part  of  any  records  this  committee  might  be  seeking  is  proof  of  the  CDC's 
failure  to  protect  confidentiality.   Names  should  never  have  been  allowed  in 
those  documents  in  the  first  place. 

NGTF-7 


I 


26-097  O— 83 3 


30 


Now  that  the  names  are  Included,  it  is  important  to  be  sure  that,  In 
conducting  your  investigation,  appropriate  safeguards  are  taken.   To  that 
end,  I  seel<  this  committee's  commitment  to  continued  work  with  the  gay/lesbian 
community  so  that  guidelines  that  are  workable  and  acceptable  to  you  and  to  us 
can  be  adopted.   I  am  confident  that  can  be  achieved. 

The  general  public,  and  most  certainly  the  gay/lesbian  community,  are 
looking  impatiently  to  biomedical  researchers  to  find  the  answers  we  so 
desperately  seek  to  this  disease.   Much  of  the  biomedical  research  is  performed 
and/or  funded  by  the  National  Institutes  of  Health.   Here,  too,  poor  planning, 
poor  procedures  and  poor  funding  are  undermining  efforts. 

Money  alone  won't  find  a  cause  or  a  cure  for  AIDS.   Research  that  is  funded 
should  address  the  right  questions  and  must  be  of  high  quality.   But  these 
criteria  do  not  necessarily  dictate  delay.   The  etiology  and  the  question  of 
transmlssibi 1 ity  through  blood  are    basic,  clearly  definable  Issues.   Yet  they 
are  just  beginning  to  be  addressed. 

Research  into  the  etiology  of  AIDS  will  not  be  funded  until  October  1983- 
The  first  Request  for  Applications  (RFA)  for  work  to  find  an  Infectious  agent 
in  this  epidemic  was  issued  in  May  1983--again,  about  two  fiscal  years  after 
AIDS  became  a  clearly  recognized  threat. 

Similarly,  the  question  of  researching  transmi ss Ibi 1 i ty  of  AIDS  and  finding 
markers  for  AIDS  in  the  blood  supply  is  still  in  the  future--at  least  as  far 
as  government-sponsored  research  is  concerned.   (The  American  Red  Cross  Is  spending 
$200,000  to  investigate  the  relationship  of  transmission  of  AIDS  to  blood 
transfusions . ) 

This  is  part  of  a  pattern  o*"  lethargy  at  NIH  that  may  have  bureaucratic 
justifications  under  normal  circumstances  but  has  no  place  during  a  crisis. 
AIDS  was  identified  as  a  disease  In  I98I.   It  was  not  until  August  1982  that 
the  first  RFA  was  issued  by  NIH  and  funds  did  not  begin  to  flow  until  May  I983-- 
and  this  under  an  allegedly  expedited  process! 

One  of  the  explanations  for  the  delay  In  issuing  grants  is  the  need  for 
peer  review.   We  certainly  do  not  want  money  wasted  on  unworthy  projects.   But 
there  is  no  reason  why  peer  review  committees  cannot  meet  on  an  emergency  basis 
to  deal  with  an  emergency  situation. 

Above  all,  when  you  look  at  how  NIH  is  handling  the  funding  of  research,  what 
is  driven  home  again  and  again  is  that  we  lack  the  resources  to  do  the  job, 
even  if  you  accept  the  Administration's  more  limited  view  of  what  needs  to  be 
done.   In  point  of  fact,  there  are  now  more  RFA's  out  than  money  appropriated 

NGTF-8 


31 


to  fund  them.   Even  the  NIH  bureaucracy  recognizes  a  greater  need  than  the 
budget  cutters  at  0MB. 

$9.6  million  was  appropriated  for  NIH  to  dea!  with  AIDS  in  fiscal  year  1983. 
That  is  the  sum  total  of  federally  sponsored  basic  research  on  AIDS,   States  and 
local  governments,  along  with  the  private  sector,  are  coming  close  to  matching 
.that  figure  on  their  own:  New  York  State  has  appropriated  $4.5  million  for 
research,  the  University  of  California  has  been  given  S2.9  million;  the  Cancer 
Research  Institute,  for  example,  is  spending  S350,000;  and  gay  community-based 
organizations  have  budgeted  about  $300,000.   This  Is  to  make  up  for  the 
federal  government's  def i c 1 encies--a  very  sad  commentary  on  the  state  of  NlH's 
response. 

The  NIH  should  issue  a  general  call  for  research  on  AIDS--one  that  does  not 
restrict  the  approaches  to  be  considered.   With  sufficient  resources  clearly 
behind  it,  such  an  effort  will  attract  the  best  scientists  in  the  country.   I  will 
leave  it  to  those  scientists  to  discuss  specific  research  projects.   But  let  me 
outline  some  of  the  basic  work  thai  needs  to  be  done:  viral  and  immunological 
research;  study  o*^  simian  AIDS:  monitoring  what  has  been  called  "prodromal"  AIDS; 
monitoring  the  U.S.  armed  forces  and  also  blood  recipients  for  incursion  of 
AIDS;  early  diagnosis  of  AIDS  and  related  treatment;  screening  tests  for  blood 
donation  ("surrogate  markers");  and  African  swine  fever  virus  tests. 

In  order  even  to  begin  the  long  process  of  systematically  Identifying  the 
transmissible  agent  for  Al DS--cr i t i cal ly  important  to  developing  a  cure  or 
preventive  measure--we  first  must  find  an  experimental  animal  species  that 
is  susceptible  to  AIDS.   This  has  not  yet  been  accomplished.   We  must  test  as 
many  different  primate  species  as  possible  in  the  hope  of  finding  one  which  Is 
susceptible.   In  humans,  AIDS  Incubates  close  to  two  years.   If  this  is  true 
in  other  primates,  research  will  be  slow  and  very  costly. 

Rhesus  monkeys  and  chimpanzees,  for  example,  cost  about  $100  per  day  to 
house  and  care  for.   To  Intravenously  expose  25  animals  in  each  of  six  species 
of  primates  with  blood  from  AIDS  patients,  and  house  them  for  two  years,  comes 
to  $10,950,000.   To  test  just  five  other  body  fluids  and  tissues  would  bring 
the  bill  to  $65,700,000.   By  adding  routine  Intraperitoneal  and  intramuscular 
exposure,  the  cost  soars  to  $1 97,000,000--al 1  this  just  to  discover  a 
susceptible  animal  so  that  real  research  can  begin. 

NGTF-9 


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32 


How  has  NIH  tack)ed  this  basic  problem?  It  is  spending  $56,000  to  determine 
if  AIDS  can  be  transmitted  to  two  chimpanzees  by  infusing  the  animals  with  plasma 
from  AIDS  patients. 

The  level  of  research  outlined  here  seems  costly.   But  is  It  really... in  terms 
of  the  lives  saved... in  terms  of  the  knowledge  gained... and  if  those  aren't  worthy 
enough  goals,  in  terms  of  money  saved  on  health  care  costs?  At  an  estimated 
$100,000  per  case,  we  have  already  spent  over  $170  million  on  health  care 
costs--and  that  figure  may  rise  to  $4.8  billion  by  the  end  of  1985  if  AIDS  cases 
continue  to  rise  at  current  rates. 

The  public  must  be  reassured  that  serious  research  is  being  done  or  their 
faith  that  this  epidemic  will  not  get  out  of  hand  may  evaporate.   They  must 
see  real  work  and  real  progress--not  announcements  of  ostensibly  new  discoveries 
that  in  fact  are  not  new.   Such  was  the  case  last  month  with  interleukin-2 ,  which 
only  cured  AIDS  in  six  test  tubes,  but  was  presented  with  such  fanfare  as  to 
give  perhaps  unreasonable  hope.   Or  was  the  announcement  timed  to  coincide 
with  Congressional  action  on  AIDS  funding--to  give  the  Congress  the  Impression 
more  money  was  not  needed? 

We  have  seen  a  good  deal  of  hysteria  on  the  subject  of  AIDS--above  all  on 
the  question  of  blood.   Let  me  restate  the  gay  community's  position  on  the  Issue 
of  blood  donations.   At  every  possible  forum  available  to  us,  we  have  urged  those 
in  our  community  who  feel  they  might  be  at  risk  to  AIDS  or  feel  unwell,  to 
voluntarily  refrain  from  donating  blood.   That  is  the  responsible  approach  and 
the  right  approach--as  we  wait  for  the  government  to  take  more  definitive  steps. 

Recent  reports  about  dangerously  low  blood  supplies  in  many  metropolitan 
areas  directly  result  from  the  government's  failure  to  investigate  the 
transmlssibi 1  I ty  of  AIDS  through  the  blood,  to  develop  a  marker  for  AIDS  In  blood, 
to  test  surrogate  markers,  or  to  study  the  safety  of  the  blood  supply  and  giving 
blood. 

The  negative  effect  this  has  had  on  blood  donations  has  endangered  more 
lives  than  the  threat  of  AIDS  itself.   I  fear  that  soon  we  are  going  to  hear 
of  someone  dying  during  an  operation  for  lack  of  a  transfusion,  because  of  the 
public  perception  that  the  blood  supply  and  giving  blood  are  unsafe. 

From  Secretary  Heckler  on  down,  the  Health  and  Human  Services  Department  has, 
of  late,  done  an  excellent  public  relations  job  reassuring  the  public  that 
there  are  not  risks  In  giving  blood,  and  that  the  dangers  of  receiving  AIDS  from 
a  transfusion  are  minimal  at  worst.   But  where  were  they  one  year  ago  when 

NGTF-10 


33 


this  issue  first  surfaced  and  the  overreaction  could  have  been  prevented?  And 
why  have  they  still  not  done  the  research  needed  to  garner  scientific  support 
for  their  position? 

In  the  meantime,  because  we  have  no  markers  and  no  conclusive  research  on 
blood,  attempts  are  being  made  to  screen  all  homosexual  men  from  donating  blood, 
making  gay  men  as  a  class  unfairly  bear  the  discriminatory  effect  of  the  govern- 
ment's Inaction  on  AIDS--whIle  blood  supplies  continue  to  drop. 

I  have  alluded  to  public  hysteria  over  AIDS  In  discussing  the  blood  question. 
Far  from  preventing  th's  hysteria,  early  statements  by  federal  officials, 
such  as  Dr.  Anthony  Fauci  of  NIH,  who  wrote  an  article  implying  that  casual 
contact  could  spread  the  disease,  actually  helped  to  Ignite  it.   AIDS  has-- 
because  of  its  mysterious  nature  and,  I  repeat,  because  of  the  groups  associated 
with  i t--generated  something  just  short  of  public  panic.   A  good  deal  of  that 
panic  has  been  fostered  by  homophobes  bent  on  turning  a  public  health  crisis 
into  yet  another  opportunity  to  attack  the  gay/lesbian  community. 

Whatever  the  cause,  AIDS  has  resulted  In  a  need  for  public  education  that, 
while  belated,  has  been  marked  recently  In  the  PHS  by  good  will  and  energetic 
attempts  to  make  ';he  best  of  limited  resources.   There  are  really  four  audiences 
for  education  efforts,  requiring  very  different  approaches:  the  general  public 
with  vague  fears  that  are  easily  calmed;  affected  or  high-risk  groups  In  need 
of  more  detailed  response;  persons  with  AIDS;  and  those  people  who  work  In 
very  close  contact  with  high-risk  groups  who  have  legitimate  concerns  that 
must  be  addressed. 

One  could  not  ask  for  more  In  the  personal  statements  of  PHS  officials 
such  as  Dr.  Brandt.   They  are  sincere  and  willing  to  be  out  front  In  reassuring 
the  public  about  unwarranted  concerns  of  casual  contact  with  persons  with  AIDS 
and  members  of  high-risk  groups.   Unfortunately,  the  programmatic  efforts 
backing  up  those  statements  are  very  weak--so  weak  that  they  leave  the  PHS 
open  to  charges  of  tokenism  and  suggestions  that  these  efforts  are  designed  to 
appease  critics  rather  than  confront  the  problem. 

The  centerpiece  of  the  public  education  effort  Is  the  federal  AIDS  hotline. 
It  is  clear  from  the  response--some  10,000  atteTipted  calls  a  day--that  this 
is  at  least  trying  to  meet  a  need.   But  the  process  becomes  a  sham  for  the 
public,  and  an  unfair  burden  on  those  assigned  to  work  on  the  hotline,  when 
you  realize  that  the  hotline  started  with  only  three  lines  and  nov/,  with  an 
additional  five,  is  capable  of  meeting  only  a  fraction  of  the  demand.   Once 
more,  despite  public  relations  hype,  the  government  Is  not  willing  to  devote 
new  resources  to  the  job. 

NGTF-11 


34 


Further,  those  staffing  the  hotline  have  been  drawn  from  other  public 
affairs  positions.   They  are  not  specially  trained  for  this  kind  of  work,  they 
are  not  experts  on  AIDS,  and  they  have  not  been  sensitized  to  the  special 
concerns  of  the  high-risk  groups  most  likely  to  call. 

The  National  Gay  Task  Force  can  speak  with  some  expertise  about  hotlines. 
Since  October  1982,  we  have  been  operating  an  AIDS  crisTsline.   Over  3,600 
people  daily  have  attempted  to  call  us.   The  volunteers  who  answer  these 
phones  have  undergone  at  least  20  hours  of  training--about  the  subject  matter, 
crisis  intervention,  and  general  sensitivity  to  the  special  needs  of  their  callers. 
There  is  no  less  of  a  need  for  such  training  for  the  federal  hotline. 

The  NGTF  Crisisline,  while  available  to  the  general  public,  does  focus  on 
the  needs  of  one  high-risk  group.   Federal  public  education  efforts  concentrate 
on  the  concerns  of  the  general  public.   But  it  is  essential  that  education  about 
AIDS  reach  the  most  affected  groups  in  particular.   It  might  not  be  appropriate 
for  the  federal  government  to  mount  such  a  campaign,  if  only  because  suspicion 
of  the  government  is  so  high  among  these  groups.   But  at  the  least,  federal 
funds  should  be  available  to  assist  community-based  organizations  carrying  on 
education  programs. 

There  is  one  more  group  of  people  for  whom  education  efforts  are  sorely 
needed  and  desperately  lacking.   We  have  heard  much  about  health  care  workers, 
morticians,  police  officers,  and  others  who  are  fearful  of  contact  with  persons 
with  AIDS  or  members  of  high-risk  groups.   Most  of  those  fears  are  unjustified. 
But  It  is  hard  to  blame  people  who  have  not  received  clear-cut  guidelines  to 
reassure  them  about  their  contacts.   This  is  definitely  a  government  responsibility- 
and  the  PHS  should  be  taking  a  stronger  lead  in  this  regard. 

The  cost  of  medical  care  for  persons  with  AIDS  is  one  of  the  more  staggering 
aspects  of  this  crisis.   While  there  are  no  hard  figures  available,  the 
common  estimate  Is  $100,000  per  patient.   Many  AIDS  patients  spend  long  periods 
in  the  hospital,  often  In  Intensive  care  units.   The  cost  can  skyrocket  if 
experimental  treatments  are  used;  for  example,  I nterleukIn-2  treatments  are 
estimated  to  run  $125,000  per  patient. 

To  obtain  a  sense  of  how  the  cost  of  health  care  affects  patients,  and  how 
that  In  turn  impedes  their  recovery,  let  me  quote  from  a  letter  published  In  JAMA 
(July  8,  1983)  from  a  group  of  physicians  at  the  University  of  Medicine  and 
Dentistry  of  New  Jersey,  New  Jersey  Medical  School,  Newark: 

NGTF-12 


35 


We  find  that  a  large  portion  of  our  AIDS  population 
is  indigent  and  unable  to  obtain  the  requisite  out- 
patient care.   In  an  ongoing  investigation  at  our 
institution,  many  patients  studied  thus  far  have 
shown  evidence  of  protein-calorie  malnutrition  and 
multiple  vitamin  deficiencies.   Once  discharged, 
they  can  neither  eat  well  enough  to  bolster  their 
deficient  nutritional  state  nor  afford  the  many 
drugs  required  for  their  multiple  infections. 

AIDS  has  pli'ced,  so  far,  a  $170  million  burden  on  our  health  care  system, 

which  has  fallen  disproportionately  on  cities  (through  Medicaid  and  city 

hospitals)  and  Individuals.   The  only  federal  response  has  been  to  make  persons 

with  AIDS  eligible  for  Social  Security  disability.   This  move,  while  positive, 

is  only  a  small  step  toward  dealing  with  the  problem--and  it  adds  to  the  false 

assumption  that  persons  with  AIDS  are    totally  disabled.   Many  continue  to  lead 

productive  lives  for  long  periods  of  time... but  this  does  not  eliminate  their 

medical  expenses. 

Mr.  Chairperson,  we  appreciate  the  leadership  you  have  shown  In  offering 
legislative  solutons  to  this  problem.   Your  bill  to  eliminate  the  waiting 
period  before  Medicare  coverage  can  be  extended  to  those  with  AIDS  deals  with  part 
of  the  problem.   And  your  Public  Health  Emergency  Treatment  Fund,  which  would 
provide  up  to  $60  million  for  cities  and  states  overwhelmed  by  the  costs  of 
caring  for  patients  during  a  health  emergency,  will  provide  some  much  needed 
relief.   In  the  meantime,  the  federal  government  must  make  certain  that  all 
possible  existing  benefits  for  which  they  are  eligible  are  extended  to  persons 
with  AIDS. 

The  overview  I  have  just  presented  on  the  AIDS  crisis  leads  to  some  important 
general  observations.   It  tells  us  some  things  about  our  nation's  health  care 
system  that  are  distressing  to  an  outside  observer  and  alarming  to  any  person 
or  group  In  the  grips  of  a  health  care  emergency. 

First,  the  system  simply  takes  too  long  to  respond  to  a  new  crisis.   Two 
years  to  begin  research  Into  the  etiology  of  a  disease.   Two  years  to  begin 
dealing  with  threats  to  the  blood  supply.   A  way  must  be  found  to  gear  up, 
to  pump  up  the  system  faster.   Cong.  Waxman's  Public  Health  Emergency  Act, 
which  sets  aside  S30  million  a  year  to  deal  with  new  crises  such  as  AIDS,  Is 
an  important  first  step  toward  making  the  health  care  system  more  responsive, 
but  even  that  must  still  be  appropriated. 

But  more  is  needed.   Standard  mechanisms  must  be  in  place  to  expedite  approval 
procedures  for  new  research.   Ways  to  beef  up  the  staffs  and  functions  of  agencies 

NGTF-13 


36 


such  as  CDC,  so  that  a  new  crisis  will  not  mean  shutting  down  or  impairing  work 
in  other  important  areas  must  be  found. 

Above  all,  the  government  must  learn  to  plan  in  a  comprehensive  and 
systematic  manner.   The  Administration's  defense  for  its  poor  performance  on 
AIDS  is  often  that  money  alone  does  not  solve  problems.   We  can  see  that:  the 
money  currently  appropriated  is  not  being  spent  as  effectively  as  it  might 
because  there  has  been  no  planning.   It  seems  so  obvious--but  it  just  hasn't  been 
done.   No  one  has  convened  the  best  minds  in  and  out  of  government  to  determine 
what  needs  to  be  done,  how  much  it  costs,  and  how  it  can  all  be  accomplished. 
Perhaps  it  is  time  to  create  an  independent  health  care  planning  cotmiission  to 
deal  with  this  issue--a  blue-ribbon  commission  comprised  of  the  best  medical 
minds  as  well  as  health  care  professionals  and  consumer  representatives,  a 
commission  that  is  insulated  from  bureaucratic  interests  and  in-fighting  that  can 
tell  us  as  objectively  as  possible  what  needs  to  be  done.   Then  we  can  hold  the 
politicians  and  bureaucrats  responsible  for  implementing  the  proposals. 

Another  concern  we  must  address  is  the  quality  of  response  offered  by 
the  government's  medical  establishment.   I  do  not  doubt  For  one  instant  the 
dedication  of  those  working  for  NIH  and  CDC,  but  serious  questions  can  and 
must  be  raised  about  the  quality  of  work  being  done  at  institutions  such  as  NIH. 
As  the  White  House  Science  Council  recently  reported,  the  quality  of  the  work 
at  NIH  is  seriously  jeopardized  by  its  inability  to  attract  top-flight  medical 
researchers.   Government  medical  service  must  be  made  an  attractive  option  for 
the  best  researchers  if  there  is  to  be  any  credibility  to  our  government's 
claim  that  CDC  and  NIH  are  the  medical  detectives  of  the  world. 

We  in  America  pride  ourselves  on  our  democratic  system.   It  should  mean 
that  we  have  a  fundamental  right  to  participate  In  decisions  that  affect  our 
lives.   But  Instead,  the  medical  establishment,  hiding  behind  medical  degrees 
and  Impressive  titles,  keeps  us  out  of  the  decision-making  process.   This  is 
true  on  an  individual  basis,  as  patients'  rights  to  choose  are  ignored  or 
trampled  upon  during  treatment  or  research  at  all  levels  of  the  health  care 
system.   And  It  Is  true  on  a  broader  basis  as  a  crisis  disproportionately  affects 
particular  groups.   This  often  has  social  as  well  as  medical  Impl Icat Ions--yet 
these  groups  are  only  allowed  audiences  with  decisionmakers  after  several  years 
of  banging  on  the  door--or  when  the  crisis  becomes  so  great  that  It  Is  expedient 
for  the  powers  that  be  to  at  least  appear  to  include  us  In  the  process.   When 

NGTF-14 


37 


one  baby  needs  a  liver  transplant,  the  crisis  gets  presidential  attention. 
When  1700  people  are    fighting  for  their  lives,  the  Administration  often  seems 
deaf  at  the  highest  levels. 

Another  issue  that  the  AIDS  crisis  has  brought  home  to  the  gay/lesbian 
community  in  letters  writ  large  in  dollar  bills,  is  the  cost  of  health  care  in 
the  United  States.   Catastrophic  illnesses  bring  catastrophic  costs.   Well  over 
$170  million  has  been  spent  on  health  care  alone  for  persons  with  AIDS.   For 
patients  or  consumers,  hospitals,  and  local  governments,  AIDS  is  just  one  more 
example  of  a  need  to  deal  forthrightly  and  thoroughly  with  the  issues  of  health 
care  costs  and  the  need  to  provide  Insurance  for  all  Americans  facing 
catastrophic  illnesses. 

Mr.  Chairperson,  I  want  to  thank  you  again  for  holding  this  hearing. 
It  has  provided  a  service  to  my  communi ty-- in  airing  our  specific  concerns  about 
the  federal  response  to  AIDS--and  an  important  service  to  the  general  public,  all 
of  whom  are  potential  consumers  in  the  American  health  care  system.   For  the 
gay/lesbian  community,  this  crisis  has  forced  us  to  focus  cur  attention  on 
our  nation's  medical  establishment  In  ways  we  vould  never  have  imagined. 

The  immediate  future  does  not  look  bright  on  the  issue  of  AIDS.   We  have  a 
great  deal  of  suffering  and  many  bat t les--emot ional  ,  medicd,  and  political-- 
ahead  of  us.   But  the  gay/lesbian  community  will  emerge  stronger  from  this 
cr  i  s-i  s--stronger  because  of  the  greater  sense  of  community  and  new  activism 
that  this  epidemic  has  generated.   When  the  AIDS  crisis  is  finally  over,  we  will 
not  forget  what  we  have  learned  about  health  care  in  the  United  States.   We  will 
use  our  growing  strength  to  return  to  the  halls  of  Congress  and  of  the  Executive 
Branch  again  and  again  until  the  deficiencies  revealed  to  us  over  the  past 
few  years  are  remedied  for  all  Americans. 

Thank  you  very  much. 


38 

Mr,  Weiss.  Mr.  Endean. 

STATEMENT  OF  STEPHEN  R.  ENDEAN,  EXECUTIVE  DIRECTOR, 
GAY  RIGHTS  NATIONAL  LOBBY 

Mr.  Endean.  Good  morning,  Mr.  Chairman,  members  of  the  sub- 
committee. 

My  name  is  Stephen  Endean.  I  am  the  executive  director  of  the 
Gay  Rights  National  Lobby.  As  you  know,  Mr.  Chairman,  Gay 
Rights  National  Lobby  is  the  only  full-time  lobby  at  Congress  on 
gay  issues  and,  until  recently,  our  primary  focus  has  been  on  insur- 
ing civil  rights  and  equal  justice  for  gay  and  lesbian  Americans. 
But  increasingly  our  focus  has  necessarily  turned  to  the  AIDS 
crisis.  We  appreciate  your  invitation  for  us  to  join  you  this  morn- 
ing. 

It  would  be  an  extreme  understatement  to  say  that  this  Nation's 
gay  community,  which  numbers  over  22  million  Americans,  is  not 
deeply  concerned  about  the  AIDS  crisis.  The  gay  community  is 
alarmed  by  both  the  slow  and  insufficient  response  of  the  Federal 
Government.  In  the  last  3  years,  not  only  gay  men  but  Haitians, 
hemophiliacs,  women  and  children  have  come  down  with  the  syn- 
drome. People  are  dying  from  a  disease  which  medical  science 
knows  almost  nothing  about. 

Secretary  Heckler  has  named  AIDS  the  number  one  public 
health  priority.  Dr.  William  Foege,  the  director  of  the  Centers  for 
Disease  Control,  has  said  "AIDS  is  the  most  complex  epidemic 
we've  ever  had  to  deal  with."  But  while  the  press  and  the  public 
have  heard  that  this  crisis  is  the  No.  1  priority,  it  appears  that  the 
administration  has  failed  to  communicate  a  similar  message  to  its 
budget  offices  or  to  the  Appropriations  Committees. 

Quite  frankly,  the  Federal  Government's  response  to  the  AIDS 
crisis  thus  far  remains  a  cruel  joke.  Since  fiscal  year  1981,  when 
AIDS  was  first  identified  as  an  epidemic,  the  National  Institutes  of 
Health,  which  is  the  largest  medical  research  organization  in  the 
world,  has  spent  only  $12  million  on  AIDS  research  to  date.  And 
yet  NIH  has  spent  $11.2  billion  on  other  medical  research  since 
fiscal  year  1981.  In  other  words,  only  one-tenth  of  1  percent  of  the 
NIH  research  budget  has  been  spent  on  AIDS.  Whether  the  reason, 
or  excuse,  is  the  inherent  bureaucratic  delays  in  responding  to 
public  health  emergencies  or  it  is  another  example  of  a  far  too 
common  institutional  homophobia  by  the  Federal  Government,  the 
response  to  date  by  the  Federal  Government  has  been  inexcusable. 

By  contrast.  State  and  local  governments,  which  normally  do  not 
even  fund  significant  medical  research  which  has  traditionally 
been  a  Federal  responsibility,  have  committed  about  $8  million  to 
AIDS  research  this  year,  almost  as  much  as  the  Federal  Govern- 
ment estimates  it  will  spend  on  basic  AIDS  research  in  1983. 

Recently,  both  Houses  of  Congress  overwhelmingly  voted  to  in- 
clude $12  million  for  AIDS  research  in  the  1983  supplemental  ap- 
propriations bill.  That  $12  million  would  nearly  double  Federal 
funding  for  AIDS  research.  Shortly  the  bill  will  go  to  President 
Reagan  and,  unfortunately,  he  has  threatened  to  veto  it.  We  sin- 
cerely hope  he  does  not,  because  even  with  the  additional  $12  mil- 


39 

lion,  researchers  will  only  be  able  to  begin  the  massive  effort  neces- 
sary to  discover  the  cause  of  AIDS  and  how  it  can  be  stopped. 

A  moment  ago,  I  alluded  to  not  only  too  little  but  too  late.  It  is 
shocking  that  it  has  taken  3  years  for  the  Federal  Government  to 
begin  to  take  action,  shocking  in  view  of  the  mortality  rate,  shock- 
ing in  view  of  the  media  attention  the  AIDS  crisis  has  received, 
shocking  in  view  of  not  only  the  deep  concern  but  near  hysteria  of 
the  American  public. 

Gay  Rights  National  Lobby  congratulates  the  Congress  for  the 
decision  to  create  a  public  health  emergency  research  fund  to  more 
expeditiously  disburse  Federal  research  dollars  to  combat  public 
health  crises  such  as  AIDS.  Representative  Waxman,  Senators 
Kennedy  and  Cranston,  and  others  who  worked  to  establish  this 
fund  certainly  deserve  our  thanks. 

It  is  important  to  remember  that  AIDS  is  the  only  infectious  dis- 
ease which  can  attack  and  destroy  the  body's  immune  system.  Be- 
cause of  this  unique  characteristic,  scientists  believe  that  if  they 
conquer  AIDS,  they  will  better  understand  the  immune  system. 
Top  medical  experts  consider  AIDS  one  of  the  great  research  chal- 
lenges and  opportunities  in  medical  history. 

But  of  course  AIDS  is  more  than  just  a  research  opportunity,  es- 
pecially to  the  more  than  1,200  Americans  who  have  the  disease. 
No  one  with  AIDS  has  lived  longer  than  3  years  after  being  diag- 
nosed, and  no  one  has  recovered  from  the  underlying  syndrome. 
Five  to  six  new  cases  are  reported  every  day,  and  the  total  number 
of  cases  doubles  every  6  months. 

Unfortunately,  having  a  critical  illness  is  only  part  of  the  burden 
persons  with  AIDS  must  carry.  The  ignorance  and  discrimination 
they  face  is  incredible.  I  applaud  you,  Mr.  Chairman,  for  including 
in  these  hearings  persons  with  AIDS  themselves.  No  one  could  pre- 
sume to  speak  for  them  or  share  their  experiences  so  eloquently. 

One  area  of  concern  is  the  staggering  medical  bills  that  persons 
with  AIDS  must  face.  Many  are  forced  to  give  up  all  their  property 
and  rely  on  medicaid  and  public  hospitals  to  provide  the  highly 
complex  and  usually  experimental  treatment  they  need.  Medicaid 
and  public  hospitals  simply  cannot  provide  this  care. 

Congressman  Weiss,  we  applaud  you  for  introducing  a  bill  last 
week  that  would  provide  $60  million  for  treatment  and  prevention 
activities  required  to  combat  public  health  emergencies  such  as 
AIDS.  The  Congress  simply  must  address  the  medical  care  needs  of 
persons  with  AIDS,  and  other  victims  of  epidemics. 

Your  bill  is  particularly  significant  in  that  it  addresses  not  only 
the  medical  care  problems  caused  by  AIDS,  but  also  the  public 
health  and  prevention  problems,  which  have  become  critical.  Hys- 
teria is  rampant.  People  are  combining  their  fear  of  the  disease, 
their  homophobia  and  their  racism,  and  using  that  combination  to 
justify  bigotry  and  discrimination  against  gays  and  against  Hai- 
tians. They  are  punishing  persons  with  AIDS  by  firing  them  from 
their  jobs,  by  denying  them  housing,  by  denying  them  fundamental 
human  rights. 

And  what  has  our  Federal  Government  done  to  quell  this  hyste- 
ria and  stop  the  backlash?  Far  too  little. 

Thus  far  no  money  has  been  budgeted  or  appropriated  for  public 
education  on  the  AIDS  epidemic.  HHS  has  prepared  a  one-page 


40 

factsheet  on  AIDS,  which  is  available  if  you  call  the  national  AIDS 
hotline.  But  good  luck.  It's  estimated  that  50  percent  of  the  callers 
who  attempt  to  get  through  on  this  hotline  don't.  If  one  gets 
through,  one  can't  expect  highly  trained  experts  on  the  subject  to 
answer  questions.  Public  relations  employees  with  no  medical  or 
public  health  training  give  standard  replies. 

While  we  can  take  some  consolation  that  Secretary  Heckler  and 
the  administration  have  not  embraced  Reverend  Falwell's  un- 
christian views  of  the  AIDS  crisis,  views  that  are  little  more  than 
justifications  for  bigotry  and  discrimination  toward  gay  people, 
HHS  education  efforts  thus  far  remain  woefully  inadequate.  A  real 
and  substantive  education  program,  not  media  hype,  is  needed. 

The  appropriations  process  for  fiscal  year  1984  is  now  underway. 
While  no  figures  are  yet  available  from  the  Appropriations  Sub- 
committee, we  are  deeply  concerned  that  none  of  the  figures  specu- 
lated about  approach  the  real  need.  Not  only  the  administration 
but  the  Congress,  that  is  charged  with  representing  all  the  people, 
people  who  live  in  great  fear  of  AIDS,  must  face  the  fact  that  funds 
must  be  increased  dramatically  and  immediately. 

The  Gay  Rights  National  Lobby,  in  cooperation  with  the  newly 
created  AIDS  Federation,  with  the  National  Gay  Task  Force,  and 
with  others  both  gay  and  nongay,  has  pledged  to  continue  to  active- 
ly advocate  such  dramatically  increased  Federal  funds  for  research, 
patient  care,  and  education  on  the  AIDS  crisis.  However,  it  re- 
mains more  than  a  little  ironic  that  lobbying  initiatives  are  even 
necessary  in  the  face  of  such  a  serious  crisis  and  statements  that  it 
is  the  No.  1  public  health  priority. 

Mr.  Chairman,  let  nothing  that  I  have  said  here  today  be  miscon- 
strued to  make  light  of  the  considerable  efforts  and  real  concern  of 
many  Members  of  Congress.  Without  those  efforts,  much  of  what 
has  been  done  probably  would  not  have  been.  But  Federal  efforts  to 
this  point  remain  too  little,  too  late,  and  too  much  business  as 
usual. 

Mr.  Chairman,  members  of  the  subcommittee,  I  congratulate  you 
on  your  hearings  and  ongoing  oversight  efforts.  I  hope  they  will 
assist  this  Congress  in  getting  to  a  more  effective  and  expeditious 
response  to  this  public  health  crisis. 

I  believe  that  Representative  Waxman,  who  has  worked  on 
health  policy  for  many  years  and  most  effectively,  is  correct  when 
he  said,  "There  is  no  doubt  in  my  mind  that  if  the  same  disease 
had  appeared  among  Americans  of  Norwegian  descent,  or  among 
tennis  players  rather  than  among  gay  males,  the  response  of  both 
the  government  and  the  medical  community  would  have  been  dif- 
ferent." 

Thank  you,  Mr.  Chairman  and  members  of  the  subcommittee,  for 
the  opportunity  to  discuss  this  matter  today. 

Mr.  Weiss.  Thank  you  for  your  testimony. 

Dr.  Compas. 


41 

STATEMENT  OF  DR.  JEAN-CLAUDE  COMPAS,  VICE  PRESIDENT, 
HAITIAN  MEDICAL  ASSOCIATION  ABROAD 

Dr.  CoMPAS.  Thank  you,  Mr.  Chairman.  Thank  you,  members  of 
the  committee,  to  invite  the  Haitian  groups  to  come  here  and 
speak  about  the  question  of  AIDS. 

In  the  United  States,  where  the  incidences  of  AIDS  and  its  fatali- 
ty rate  have  been  m.ost  impressive,  scientists  began  investigating 
the  disease  more  than  3  years  ago.  However,  causative  factors  and 
mechanisms  of  transmission  have  not  yet  been  definitively  deter- 
mined. Despite  the  lack  of  a  conclusive  scientific  data  base  and,  as 
Haitian  AIDS  patients  have  repeatedly  and  persistently  denied  any 
history  of  homosexuality,  drug  abuse  or  hemophilia,  U.S.  health 
authorities  declared  Haitians  a  high-risk  group. 

In  an  effort  to  rationalize  this  arbitrary  classification,  several 
theories  have  emerged.  At  the  outset,  it  was  suggested  that  AIDS 
might  have  originated  in  Haiti  as  a  result  of  the  voodoo  practices. 
It  was  then  suggested  that  Haitians  may  be  genetically  predisposed 
to  the  disease.  As  neither  of  these  hypotheses  could  be  scientifically 
substantiated,  the  so-called  Haitian  connection  was  more  recently 
explained  by  establishing  a  liaison  between  the  African  swine 
fever,  which  had  struck  Haiti  in  1978,  and  the  deadly  new  syn- 
drome, through  the  alleged  consumption  of  undercooked  pork  by 
Haitians,  followed  by  homosexual  relations  between  Haitian  male 
prostitutes  and  homosexual  American  tourists — Newsweek,  May 
16,  1983.  The  latest  one  states  that  there  must  be  some  tropical  fac- 
tors in  the  Haitian  connection. 

The  most  elementary  analysis  of  these  theories  indicates  that 
there  was  a  great  deal  of  unfounded  speculation  by  the  CDC  and 
other  U.S.  AIDS-related  groups.  To  date,  no  epidemiologic  survey 
has  ever  been  conducted  among  the  Haitian  population  in  the 
United  States.  Most  of  the  data  used  by  the  CDC  and  other  health 
authorities  were  gathered  by  hospital-based  physicians  with  no 
knowledge  of  French  or  Haitian  Creole  and  who,  in  addition,  have 
admitted  to  a  complete  ignorance  of  the  intricacies  of  Haitian  cul- 
ture. 

Sociologists  have  established  that  diseases  such  as  tuberculosis, 
syphilis,  epilepsy,  and  behaviors  such  as  homosexuality  and  drug 
abuse  are  strongly  stigmatized  and  taboo  in  highly  religious  and 
non-Western  societies  such  as  Haiti.  No  Haitian  should  therefore 
be  expected  to  ever  admit,  let  alone  confess  to  a  stranger,  having 
had  at  any  time  engaged  in  these  so-called  deviant  practices. 

In  addition,  most  of  the  Haitian  AIDS  victims  are  uneducated,  do 
not  speak  English  or  French  and,  having  no  legal  status  in  the 
United  States,  live  in  constant  fear  of  being  deported.  The  credibil- 
ity of  their  responses  to  any  American  interviewer  should  certainly 
be  considered  questionable,  at  best. 

In  an  attempt  to  investigate  the  African  swine  fever  connection, 
the  serum  of  Haitian  AIDS  patients  in  Haiti  was  tested  for  the 
presence  of  antibodies  to  African  swine  fever  virus — The  Lancet, 
July  9,  1983,  page  110.  These  antibodies  were  not  detected. 

Haitian  physicians  investigating  in  Haiti  and  in  the  United 
States,  though  working  with  far  less  sophisticated  technical  facili- 
ties and  more  modest  financial  means  than  researchers  from  the 


42 

CDC,  have  established  that  more  than  30  percent  of  the  Haitian 
AIDS  population  have  actually  admitted  to  homosexual  experience. 
This  points  to  the  necessity  of  utilizing  Haitian  personnel  in  re- 
search activities. 

As  a  result  of  their  separate  classification,  a  Haitian  phobia  rap- 
idly developed  in  U.S.  communities.  Haitians  across  the  country 
were  being  evicted  from  their  jobs. 

Children  were  not  spared.  Haitian  pupils  were  harassed  by  their 
schoolmates.  Mothers  forbade  their  children  to  play  with  Haitian 
children.  In  an  elementary  public  school  in  Brooklyn,  a  teacher  re- 
fused to  resume  her  classroom  activities,  stating  that  there  were 
too  many  Haitians  on  the  premises. 

THE  MEDICAL  ENVIRONMENT 

Haitian  AIDS  victims  are  mostly  recent  undocumented  immi- 
grants without  any  legal  status.  In  the  hospital,  they  suffer  the 
same  discriminatory  treatment  as  other  AIDS  patients.  However, 
upon  discharge  from  those  facilities,  they  face  additional  insults. 
They  are  not  eligible  for  social  services  or  any  type  of  public  assist- 
ance such  as  medicaid.  Even  the  victims  who  are  legal  immigrants 
are  newcomers  to  the  country  and  are  therefore  unaware  of  availa- 
ble resources. 

HAITIANS'  RESPONSE  TO  AIDS 

Since  the  beginning  of  this  ordeal,  Haitian  communities  across 
the  country  have  set  up  special  AIDS  task  forces.  In  New  York,  for 
example,  we  have  organized  a  scientific  committee  for  research 
purposes  and  have  founded,  in  cooperation  with  the  community, 
the  Haitian  Coalition  on  AIDS.  Immunologic  studies  which  we 
have  performed  in  collaboration  with  Downstate  Medical  Center 
have  demonstrated  that  there  is  no  immunodeficiency  in  the  Hai- 
tian population. 

From  a  sociological  perspective,  we  have  had  to  deal  with  three 
major  problems.  These  include  the  growing  fear  and  frustration  of 
the  Haitian  community,  the  detrimental  relations  between  the  Hai- 
tian community  and  its  neighbors  and  the  social  problems  encoun- 
tered by  the  victims  of  AIDS. 

In  most  communities,  the  Haitian  Coalition  on  AIDS  has  done  its 
best  to  overcome  these  three  problems.  We  have  employed  a  multi- 
media approach  in  attempting  to  educate  the  population.  We  have 
been  faced  with  the  necessity  of  sheltering  some  of  the  victims;  we 
have  had  to  provide  food  and  money  to  buy  their  expensive  medica- 
tions. We  must  see  to  it  that  they  are  educated  so  that  they  can 
understand  what  is  being  told  to  them  in  the  hospitals.  We  must 
also  provide  some  form  of  counseling  for  relatives  and  close  friends 
whose  confusion  and  frustrations  are  multiplied  because  of  the  lan- 
guage barrier.  All  of  these  activities  are  being  carried  out  without 
the  help  of  any  local  or  Federal  agencies. 

Regarding  relations  with  the  American  community,  we  think 
that  at  this  stage  it  is  imperative  to  inform  Americans  that  Hai- 
tians were  erroneously  classified  as  a  high-risk  group.  As  of  July 
28,  1983,  New  York  City  no  longer  lists  Haitians  as  a  high-risk 
group. 


43 

We  appreciate  Dr.  David  Sencer's  courageous  and  scientific 
stand.  However,  it  is  not  enough  that  categorization  remain  in  the 
Federal  list.  The  CDC  argue  that  the  total  Haitian  case  is  very 
high  compared  to  the  Haitian  population  here,  103-to-l  million — 
but  what  if  we  were  to  designate  their  1922  cases  according  to  na- 
tional origins.  Let  us  ponder  about  this  statement. 

While  we  are  aware  that  the  CDC  is  currently  launching  an  epi- 
demiologic study  of  the  Haitian  community,  we  emphasize  that  it 
will  not  be  valid  unless  it  utilizes  professionals  and  questionnaires 
adequately  adopted  to  our  Haitian  culture. 

On  the  social  front,  we  must  develop  a  program  to  repair  the 
damage  caused  by  this  unscientific  classification  of  Haitians  by  the 
CDC.  To  accomplish  this  vast  task,  we  will  need  cooperation  by  the 
various  public  health  authorities  and  the  media  as  well  as  substan- 
tial resources.  We  need  educational  and  counseling  programs;  we 
need  halfway  houses  for  our  patients.  In  addition,  we  need  to  devel- 
op some  type  of  financial  relief  for  victims  of  AIDS  which  will 
apply  to  all  victims,  regardless  of  their  immigration  status. 

Again,  our  resources  are  severely  limited.  As  recent  immigrants 
in  this  country,  we  do  not  have  the  connections  or  the  means  to 
make  our  voices  heard.  Even  if  we  do  succeed  in  telling  the  truth, 
the  public,  we  will  still  have  to  deal  with  the  subtle,  yet  malignant, 
fear  that  people  carry  within  themselves  when  they  are  faced  with 
ignorance  and  misinformation. 

We  deeply  appreciate  the  opportunity  you  have  given  us  to 
present  our  case  before  this  subcommittee.  We  have  all  gratefully 
received  the  moral  support  of  various  community  groups  and  politi- 
cians. This  support  has  been  vital  to  us  and  to  our  efforts.  Unfortu- 
nately, the  support  which  we  have  received  falls  far  short  of  our 
necessities.  The  task  before  us  is  of  tremendous  magnitude  and  will 
require  substantial  Federal  funding.  We  urge  you  to  consider  our 
plight  and  to  act  accordingly. 

Thank  you. 

[The  prepared  statement  of  Dr.  Compas  follows:] 


44 

Prepared  Statement  of  Dr.  Jean-Claude  Compas,  Vice  President,  Haitian  Medi- 
cal Association  Abroad,  New  York  Chapter,  Chairman,  Haitian  Coaution  on 
AIDS 

DflRCOUCnON 

As  is  well  known,  the  disease  narf  identified  as  the  Acquired  Imnuno-Deficiency 
Syndrome,  or  AIDS  seems  to  have  erupted  simultaneously  in  ncre  than  17  countries 
throughout  the  world  during  the  past  four  years.  In  four  of  these  countries, 
nanely,  the  Zaire  and  the  Congo  in  Africa,  and  the  United  States  and  Haiti  in  the 
Western  Hemisphere,  it  has  taken,  in  the  past  twelve  itonths,  the  form  and  the 
virulence  of  an  epidemic. 

In  the  Lhited  States,  where  the  incidence  of  AIDS  and  its  fatality  rate  have 
been  irost  iitpressive,  scientists,  including  specialists  in  imnunology  and  epide- 
miology began  investigating  the  disease  more  than  three  years  ago.  However, 
causative  factors  and  mechanisms  of  transmission  have  not  yet  been  definitively 
determined.  Despite  the  lack  of  conclusive  sciencific  data  base,  a  high-risk 
group  categorization  was  established  by  the  Center  for  Disease  Control  (CDC)  in 
late  1982  based  solely  upon  the  incidence  of  the  disease  in  the  New  York  area. 
As  a  resiilr,  three  social/medical  groups,  homosexuals,  intravenous  drug  abusers 
and  hemophiliacs,  and  one  ethno-national  community,  Haitian  immigrants,  were 
labelled  as  being  responsible  for  the  eruption  and  the  spread  of  the  AIDS  outbreak. 
For  the  first  time  in  history,  a  disease  was  being  attributed  to  a  nationality 
without  clear  epidemiologic  or  scientific  justification. 


THE  FACTS 

In  1981,  a  few  Haitians  residing  in  the  United  States  were  diagnosed  with 
Pneumocystis  Carinii  Pneumonia  -  a  lung  infection  caused  by  a  parasite  -  and 
Kaposi's  Sarcoma  -  a  rare  form  of  tumor  or  cancer  of  the  blood  vessel  walls; 
two  infections  that  were  identified  as  being  most  caranonly  associated  with 
the  AIDS  syndrome.  During  the  same  period,  the  same  pathological  conditions 
were  diagnosed  in  much  greater  numbers  among  homosexuals,  intravenous  drug 
abusers  and  hemophiliacs. 


-1- 


45 


In  1983,  the  number  of  AIDS  victims  in  the  United  States  rose  to  1552,  and  the 
social  profile  of  the  disease  displayed  the  following  pattern  according  to  a  July 
27,  CDC  report: 


CASES 


Homosexuals  or  Bisexuals 

71.3% 

1901 

IV  Drug  Abusers 

17.1 

266 

Haitians 

5.0 

101 

Hanophiliacs 

0.8 

13 

Unknown 

5.8 

90 

As  Haitian  AIDS  patients  have  repeatedly  and  persistently  denied  any  history 
of  hoiosexuality,  drug  abuse  or  hemophilia.  United  States  health  authorities,  for 
statisticcil  purposes, declared  them  a  separate  high-risk  group. 

In  an  effort  to  rationalize  this  arbitrary  classific  ation,  three  theories 
have  CTierged.  At  the  outset,  it  was  suggested  that  AIDS  might  have  originated  in 
Haiti  as  a  result  of  tlie  Voodoo  practices.  It  was  then  suggested  that  Haitians  may 
be  genetically  predisposed  to  the  disease.  As  neither  of  these  hypotheses  could 
be  scientifically  substantiated,  the  so-called  Haitian  connection  was  more  recently 
explained  by  establishing  a  liaison  between  the  African  Swine  Fever  -  which  had 
struck  Haiti  in  1978  -  and  the  deadly  new  syndrome,  through  the  alleged  consunption 
of  undercooked  pork  by  Haitians  followed  by  homosexual  relations  between  Haitian 
male  prostitutes  and  homosexual  American  tourists  (Newsweek, May  16,  1983)  . 

The  most  elementary  analysis  of  these  theories  indicates  that  there  was  a  great 
deal  of  unfounded  speculation  by  the  CDC  and  other  U.S.  AIDS-related  groups. 

To  date,  no  epidaniologic  survey  has  ever  been  conducted  among  the  Haitian 
population  in  the  United  States.  Most  of  the  data  used  by  the  CDC  and  other  health 
authorities  were  gathered  by  hospital-based  physicians  with  no  knowledge  of  French 
or  Haitian  Creole  and  v*io,  in  addition,  have  admitted  a  ccatplete  ignorance  of  the 
intracacies  of  Haitian  culture.  Sociologists  have  established  that  diseases  such 
as  tuberculosis,  syphilis,  epilepsy,  and  behaviors  such  as  homosexuality  and  drug 
abuse  are  strongly  stigmatized  in  highly  religious  and  non-western  societies  such 
as  Haiti.  Those  Haitians  who  have  been  victimized  by  AIDS  have  originated  primarily 


26-097  0—83- 


46 


fron  the  lower  socioeconamic  strata  vAiere  such  practices  are  particularly  taboo. 
No  Haitian  should  therefore  be  expected  to  ever  admit,  let  alone  confess  to  a 
stranger,  having  had  at  any  time  engaged  in  these  'deviant  practices. 

In  addition,  nost  of  the  Haitian  AIDS  victims  are  uneducated,  do  not  speak  English 
or  French  and,  having  no  legal  statxas  in  the  U.S.  live  in  constant  fear  of  being 
deported.  The  credibility  of  their  responses  to  any  American  interviewer  should 
certainly  be  considered  questionable  at  best. 

Furthentore,  the  Haitian  diaspora  is  not  limited  to  the  U.S.  Approximately  one-third 
of  the  population  of  the  Bahamas  is  coiposed  of  Haitians.  There  are  sane  300,000 
Haitians  in  the  Dotiinican  Republic,  15-20,000  in  French  Guyana  and  8-10,000  in  the 
French  Antilles.  Yet,  no  occurrence  of  AIDS  has  been  reported  in  these  territories. 

On  the  other  hand,  Haitian  physicians  investigating  in  Haiti  and  their  colleagues 
of  the  Haitian  Doctors  Association  (AMHE)  operating  in  the  U.S.,  though  working  with 
far  less  sophisticated  technical  facilities  and  more  modest  financial  means  than 
researchers  from  the  CDC, have  established  that  more  than  30%  of  the  Haitian  AIDS 
population  have  actually  admitted  to  a  honosexual  experience. 

In  an  attanpt  to  investigate  the  African  Swine  Fever  connection,  the  serum  of  Haitian 
AIDS  patients  in  Haiti  was  tested  for  the  presence  of  antibodies  to  African  Swine 
Fever  (ASFV)  by  inmunoelectro-osmophoresis  and  by  indirect  iimiuno-fluorescence  (The 
Lancet,  July  9,  1983,  p.  110).  These  antibodies  were  not  detected.  Investigations 
on  necropsy  or  biopsy  materials  were  also  unsuccessful  (ibid,  loc) . 


THE  SOCIAL  ENVXEO^MENT 

As  a  result  of  their  separate  high-risk  classification,  other  high-risk  groups  began 
to  use  the  Haitians  as  scapegoats,  blaming  their  miseries  on  the  imaginary  Haitian 
connection.  The  media  also  capitalized  on  the  issue.  As  a  spawned  population, 
because  of  their  intnigrant  and  low  socioeconcmic  status,  Haitians  had  no  access  to 
U.S.  itedia.  It  was  simple  to  turn  the  anger  of  an  already  panicking  population 
against  black,  poor,  illegal  iitmigrants .  A  New  York  magazine  correctly  noted  that 
every  Haitian  had  become  an  object  of  dread. 


47 


A  Haitian  phobia  rapidly  developed  in  U.S.  cotinunities .  As  a  result,  Haitians  across 
the  country  were  being  evicted  frcm  their  jobs.  Restaurants,  hotels  and  parking  areas 
were  firing  their  Haitian  personnel.  Haitian  hare  attendants  and  housekeepers  were 
ejected  frcm  their  employment.  In  one  particular  instance,  a  Haitian  maid  presented 
herself  to  work  on  a  Monday  morning,  only  to  find  all  of  her  belongings  in  the  street 
and  to  be  told  through  a  closed  door  that  as  all  Haitians  were  sick  she  would  not 
receive  her  salary  directly  but  by  mail.  Haitian  applicants  were  advised  by  Heme 
Services  Agencies  not  to  reveal  their  Haitian  identity  if  they  wanted  to  be  accepted 
by  the  clients.  The  New  York  Times,  Channel  ABC  and  other  prominent  media  confirmed 
these  horror  stories. 

Children  were  not  spared.  Haitian  pupils  were  harrassed  by  their  schoolmates.  Nksthers 
forbade  their  children  to  play  with  Haitian  children.  In  an  eleitentary  public 
school  in  Brooklyn,  a  teacher  refused  to  resume  her  classroan  activities  stating 
that  their  were  too  many  Haitians  on  the  premises.  In  seme  apartnent  houses,  leaf- 
lets were  circulated  urging  parents  not  to  let  their  children  mingle  for  any  purpose 
with  their  Haitian  counterparts. 


THE  MEDICAL  ENVIPONMENT 

Haitian  patients  have  been  receiving  minimal  care  in  hospitals  because  of  fear  of 
j*iysical  contact  by  health  care  workers  and  professionals.  The  incidence  of  psycho- 
somatic diseases  such  as  headaahes,  acute  ulcers,  impotence,  generalized  itching  and 
stress  related  diseases  such  as  hypertension  have  been  increasing  in  the  Haitian 
catmunity.  The  pride  and  self-esteem  of  the  Haitian  population  has  also  been 
damaged  iinneasurably.  The  management  of  this  crisis  by  the  American  Public  Health 
Ccnimmity  has  made  it  extremely  difficult  and  painful  for  most  Haitians  to  admit 
their  identity. 

Haitian  AIDS  victims  are  mostly  recent  undocumented  immigrants  without  any  legal 
status.  In  the  hospital,  they  suffer  the  same  discriminatory  treatment  as  other  AIDS 
patients.  However,  upon  discharge  from  those  facilities,  they  face  additional 
insults.  Many  of  them, being  recent  immigrants,  have  no  families.  Others  are  rejected 
by  their  families  and  friends.  They  have  no  place  to  live  and  cannot  find  rooms. 
They  are  not  eligible  for  social  services  such  as  Medicaid.  Even  the  victims  who 
are  legal  irtmigrants  are  newccroers  to  the  country  and  are  therefore  unaware  of 


48 


available  resources.  Ihe  stress  experienced  by  these  AIDS  victims  upon  release 
frxan  the  hospital  could  contribute  to  the  higher  mortality  rate  suffered  among  the 
Haitian  AIDS  population. 


HAITIAN  RESPOSISE  TO  AIDS 

Since  the  beginning  of  this  ordeal,  every  substantially  sized  Haitian  conmunity 
across  the  country  has  set  up  special  AIDS  Task  Forces.  In  New  York,  for  example, 
we  have  organized  a  scientific  cartitdttee  for  research  purposes  and  have  founded, 
in  cooperation  with  the  ccmnLinity,  a  Haitian  Coalition  on  AIDS.  Inmunologic  studies 
which  we  have  performed  in  collaboration  with  Downstate  Medical  Center  have  demon- 
strated by  randcsn  blood  sampling  fron  the  Haitian  popiiLation,  that  there  is  no 
iimiunodeficiency  in  the  Haitian  population  at  large, nor  is  there  a  tendency  among 
Haitians  to  develop  AIDS. 

We  have  been  debating  with  the  CDC  the  potential  for  an  extensive  epidemiologic 
study  vdiich  would  investigate  all  centers  of  heavy  Haitian  intnigration .  We  have 
stipulated  in  our  discussions  that  Haitian  scientists  and  professionals  should  be 
involved  in  these  studies.  So  far,  no  official  answer  has  been  received. 

On  the  social  aspect  of  the  AIDS  issue  've  have  had  to  deal  with  three  major 
problems.  These  include  the  growing  fear  and  frustration  of  the  Haitian  camunity, 
the  detrimental  relations  between  the  Haitian  contiunity  and  its  neighbors  and 
the  social  problems  encountered  by  the  victims  of  AIDS. 

In  most  coninunities,  the  Haitian  Cocilition  on  AIDS  has  done  its  best  to  overccroe 
these  three  problems.  We  have  employed  a  multimedia  approach  in  attempting  to 
educate  the  population.  However,  our  efforts  are  hampered  by  severe  financial 
constraints. 

No  study  has  yet  been  done  to  evaluate  the  long  term  effect  of  the  AIDS  propaganda 
on  the  Haitian  camunity.  We  have  established  an  information  hotline  and  have 
tried  to  provide  counseling  for  the  families  of  the  victims. 

Regarding  relations  with  the  Alter ican  cotttnunity,  we  think  that  at  this  stage,  it  is 
necessary  to  tell  the  public  the  truth  about  the  transmissibility  of  the  disease  and 
to  inform  Anericans  that  Haitians  were  erroneously  classified  as  a  high-risk  group. 

-5- 


49 


Again,  our  resources  are  very  limited.  As  recent  iirmigrants  in  this  country,  we  do 
not  have  the  connecticins  or  the  means  to  make  our  voices  heard.  Even  if  we  do  succeed 
in  telling  the  truth  to  the  public,  we  will  still  have  to  deal  with  the  subtle  fear 
that  people  carry  within  themselves  v^en  they  are  faced  with  ignorance  and  misinforma- 
tion. 

We  have  been  faced  with  the  necessity  of  sheltering  some  of  the  victims  as  well  as 
their  families.  We  have  had  to  provide  food  and  money  to  buy  their  expensive 
medications.  As  already  mentioned,  many  of  these  patients  are  undocunented  aliens 
and  have  been  denied  social  benefits.  We  must  see  to  it  that  they  are  educated  so 
that  they  can  understand  v*at  is  being  told  to  them  in  the  hospitals.  We  must  also 
provide  seme  form  of  counseling  for  relatives  and  close  friends  vdiose  confusion  and 
frustrations  are  multiplied  because  of  the  language  barrier.  All  of  these  activities 
have  been  and  are  being  carried  out  v.i.thout  the  help  of  any  local  or  federal  agencies. 

Vfe  deeply  appreciate  the  opportimity  you  have  given  us  to  present  our  case  before 
this  Subccnmittee.  We  warmly  thank  Congressman  Major  Owens  for  his  help  in  the 
Brooklyn  area.  We  have  all  gratefully  received  the  moral  support  of  groups  such 
as  the  National  Council  of  Churches,  1199  and  DC37,  the  Bedford  Stuyvesant  Family 
Health  Center  and  Downstate  Medical  Center.  This  support  has  been  vital  to  us. 
Unfortunately,  the  support  vAiich  we  have  received  falls  far  short  of  our  necessities. 


OUR  NEEDS 

On  the  scientific  front,  an  adequate  epidemiologic  stu(^  including  proper  interviewers 
and  questionnaires  adequately  adapted  to  our  Haitian  culture  should  be  the  priority. 
We  do  kno^.'  that  the  CDC  is  launching  such  a  study.  However,  we  enphasize  that  in 
order  to  be  successful,  it  must  use  professionals  v\,tio  are  familiar  with  the  Haitian 
culture.  The  study  will  not  be  valid  otherwise.  In  addition,  we  need  a  broader 
spectrum  of  irtitiunologic  research  studies. 

On  the  social  front,  we  must  develop  a  program  to  repair  the  damage  caused  by  this 
unscientific  classification  of  Haitians  by  the  CDC.  We  need  programs  to  educate 
our  people  as  well  as  the  American  conmunity  and  to  do  counseling  for  the  family 
manbers  of  the  victims.  We  need  halfway  houses  for  the  patients  with  no  housing  in 
order  to  alleviate  their  suffering  and  prevent  the  dissemination  of  AIDS.  The  task 
is  indeed  of  tremendous  magnitude  and  requires  substantial  federal  funding.  . 


89 


-6- 


50 
Mr.  Weiss.  Mr.  Brownstein. 

STATEMENT  OF  ALAN  P.  BROWNSTEIN,  EXECUTUVE  DIRECTOR, 
NATIONAL  HEMOPHILIA  FOUNDATION 

Mr.  Brownstein.  Thank  you  very  much. 

The  National  Hemophiha  Foundation  is  most  grateful  for  the 
support  that  Congress  has  provided  over  the  years  for  much  needed 
hemophilia  research  and  care.  This  support  has  facilitated  a  revo- 
lution in  hemophilia  treatment  over  the  last  10  years. 

Plasma  clotting  factor  concentrates  have  become  widely  available 
and  home  infusion  therapy  has  freed  these  patients  from  hospital 
care  and  emergency  room  visits. 

The  committee  report  accompanying  the  Omnibus  Budget  Recon- 
ciliation Act  of  1981  concluded,  "Hemophilia  treatment  is  one  of 
the  biomedical  and  medical  successes  of  the  decade."  This  state- 
ment is  based  on  clear-cut  documentation  of  progress  in  hemophilia 
treatment.  And  I  ask  you  to  consider  the  following  1981  data  as 
compared  with  1975. 

The  number  of  patients  on  home  care  has  nearly  quadrupled. 
Hospital  utilization  is  down,  more  than  80  percent;  average  hospi- 
tal days  per  year  reduced  from  9.4  to  1.8.  The  percent  of  unem- 
ployed adults  dropped  from  36  percent  to  12.8  percent.  These  im- 
portant human  benefits  are  coupled  with  significant  economic  sav- 
ings. Careful  studies  have  documented  a  62-percent  reduction  in 
total  health  costs  per  patient  for  the  9,500  hemophiliacs  enrolled  in 
Federal  subsidized  comprehensive  care  centers.  This  is  down  from 
$15,800  in  1975  to  $5,932  per  person  in  1981. 

Clearly  the  advances  in  hemophilia  care  have  enabled  hemophili- 
acs for  the  first  time  in  history  to  lead  nearly  normal  full  and  pro- 
ductive lives. 

Now  we  are  faced  with  the  frightening  specter  of  AIDS.  Al- 
though in  absolute  terms  the  number  of  hemophiliacs,  16,  who 
have  become  afflicted  with  AIDS  may  seem  small,  the  risk  of  con- 
tracting AIDS  is  far  greater  among  hemophiliacs  than  any  other 
risk  group.  Today,  of  the  20,000  hemophiliacs,  one  out  of  1,250  has 
contracted  AIDS. 

Further,  if  you  consider  that  there  are  approximately  7,500  he- 
mophiliacs who  are  classified  as  severe,  that  is  those  who  are  far 
more  dependent  upon  blood  products,  the  risk  is  much  greater,  one 
out  of  every  500  hemophiliacs.  It  is  indeed  ironic  that  the  very  sub- 
stance that  has  served  to  liberate  hemophiliacs  from  the  disabling 
aspects  of  their  disease  is  now  highly  suspect  as  the  source  of 
AIDS. 

The  fear  of  AIDS  among  hemophiliacs  has  been  exacerbated  by 
extensive  and  in  some  instances  distorted  reporting  by  the  media. 
Some  patients  have  abandoned  appropriate  use  of  blood  products 
because  they  fear  contracting  AIDS.  This  is  documented  by  report- 
ed reductions  in  blood  clotting  factor  sales.  These  are  reports  from 
industry  as  well  as  from  treatment  centers  that  are  reporting  re- 
duced use  of  the  much  needed  clotting  factor. 

This  is  an  inappropriate  response  and  the  foundation  is  now 
making  major  efforts  to  urge  hemophiliacs  to  maintain  use  of  the 
clotting  factor  in  the  treatment  of  hemorrhagic  episodes. 


51 

The  risk  of  not  treating  exceeds  the  risk  of  contracting  AIDS,  be- 
cause uncontrolled  bleeding  is  the  leading  cause  of  death  among 
hemophiliacs,  not  to  mention  the  potential  of  serious  orthopedic 
complications  and  crippling  if  bleeding  episodes  are  untreated. 

The  fear  of  AIDS  has  other  tragic  implications.  No  longer  are  flu 
symptoms  or  fever  passed  off  as  trivial  problems.  Some  family 
members  have  questioned  whether  physicial  closeness  with  hemo- 
philic children  may  be  dangerous.  Similarly,  sexual  partners 
wonder  whether  intercourse  should  be  avoided.  Many  physicians 
and  treatment  centers  are  deluged  with  calls  from  apprehensive 
patients  and  families  seeking  information,  and  of  course  reassur- 
ance. Many  patients  are  fearful  that  their  treatment  may  be 
changed.  And  this  is  a  threat  to  the  autonomy  they  have  gained 
through  home  therapy.  And  this  represents  a  potential  of  being  set 
back  two  decades  to  the  old  sense  of  helplessness  and  dependence 
upon  others. 

As  you  can  see,  the  incidence  of  AIDS  among  hemophliacs  is  of 
serious  concern.  But  of  even  greater  concern  is  the  profound 
impact  of  the  threat  of  AIDS. 

We  are  most  grateful  for  the  support  of  Congress  and  the  Federal 
agencies  involved  with  AIDS.  All  of  the  Federal  agencies  involved 
with  AIDS  and  hemophilia  have  worked  closely  with  the  National 
Hemophilia  Foundation  during  this  difficult  period. 

CDC  has  kept  us  informed  of  all  new  cases  and  hemophilia-relat- 
ed developments  in  a  timely  way  so  we  have  ample  time  to  commu- 
nicate to  treatment  centers,  chapters,  and  patients  throughout  the 
country.  This  has  helped  a  great  deal  to  reduce  undue  alarm  that 
results  from  misunderstanding  of  media  reports  about  the  disease. 
The  CDC  has  involved  the  input  of  our  medical  expertise  and  is 
working  in  collaboration  with  the  foundation  on  two  major  studies. 

The  NIH  as  well  has  worked  closely  with  the  foundation  and  has 
relied  heavily  upon  the  input  of  our  medical  experts.  In  response  to 
the  urgency  of  AIDS,  NHLBI  has  provided  increased  funding  sup- 
port for  AIDS  research  and  has  successfully  compressed  the  peer 
review  process  without  sacrificing  quality  in  order  to  get  new  re- 
search activity  moving  as  quickly  as  possible. 

For  example,  a  study  of  blood  product  use  in  genetic  and  immu- 
nologic factors  that  may  contribute  to  the  development  of  AIDS  was 
approved  in  a  very  short  time.  This  is  also  true  of  two  other  impor- 
tant studies  that  are  just  getting  off  the  ground  that  will  begin  in 
early  1984,  which  is  much  shorter  than  the  usual  review  process. 

One  of  the  problems  regarding  research,  according  to  our  medi- 
cal advisers,  is  related  to  the  very  complexities  of  the  disease  itself. 
Because  of  the  many  unknowns,  it  has  been  difficult  for  the  scien- 
tific community  to  develop  a  well-focused  research  strategy  which 
is  needed. 

Last  January  the  National  Hemophilia  Foundation's  Medical  and 
Scientific  Advisory  Council  issued  a  series  of  recommendations. 
These  recommendations  included  urging  that  those  who  might 
transmit  AIDS  should  be  excluded  from  blood  donation.  And  here 
again  the  Public  Health  Service,  with  the  involvement  of  CDC  and 
the  Food  and  Drug  Administration,  used  a  series  of  recommenda- 
tions directed  at  discouraging  blood  donation  from  high-risk 
groups. 


52 

Last,  the  Office  of  Maternal  and  Child  Health,  which  has  respon- 
sibility for  the  Federal  Hemophilia  Treatment  Center  program,  has 
been  supportive  of  all  of  our  efforts  concerning  AIDS. 

In  summary,  we  are  pleased  with  the  support,  sensitivity,  and 
sense  of  urgency  demonstrated  by  the  various  branches  of  the 
Public  Health  Service. 

But  the  needs  that  have  been  created  by  the  AIDS  crisis  in  our 
view  will  require  much  more  Federal  support  in  the  years  ahead. 
The  National  Hemophilia  Foundation  considers  research  in  this 
area  to  be  a  matter  of  highest  priority.  We  urge  you  to  give  this 
problem  your  most  serious  consideration. 

Adequate  funding  should  be  provided  to  the  CDC  to  expand  its 
epidemiologic  investigation  and  laboratory  studies  of  AIDS,  and 
major  increase  in  allocations  to  the  NIH  are  needed  to  study  the 
etiology  of  AIDS. 

Basic  research  is  fundamental  in  helping  us  to  learn  more  about 
this  disease.  In  addition,  the  special  urgency  represented  by  AIDS 
requires  specific  funding  support.  The  recently-enacted  Public 
Health  Emergency  Research  Act  should  be  fully  funded  at  the  $30 
million  level,  so  that  funding  will  be  available  as  new  develop- 
ments unfold  with  AIDS. 

The  AIDS  crisis  has  created  a  need  for  comprehensive  care  for 
hemophiliacs  that  is  greater  than  ever  before.  An  informal  sam- 
pling revealed  a  25-35  percent  increase  in  patient  encounters  at 
many  comprehensive  centers  throughout  the  country  due  to  AIDS. 
Physicians  and  nurses  are  seeing  patients  more  frequently  as  pa- 
tients are  being  examined  and  tested  for  AIDS  type  symptoms.  Pa- 
tients require  more  education  concerning  their  risks  and  fears  as 
well  as  the  treatment  of  actual  AIDS  cases.  This  increased  demand 
for  care  is  most  difficult  because  most  of  these  treatment  centers 
are  operating  on  a  shoestring  budget  as  it  is. 

We  urge  an  additional  $2  million  of  new  funding  to  be  ear- 
marked for  the  Hemophilia  Treatment  Center  program  for  a  total 
of  $4.6  million  for  fiscal  1984.  This  additional  funding  is  essential 
to  the  increase  in  new  AIDS-induced  demand  for  services. 

Because  there  is  so  much  misunderstanding  about  AIDS  and  he- 
mophilia, it  is  important  that  funding  be  provided  to  expand  the 
flow  of  accurate  information  to  physicians  and  patients  throughout 
the  country  in  order  to  improve  patient  care  and  to  coordinate  he- 
mophilia-related research  activity.  Currently,  the  National  Henio- 
philia  Foundation  is  partially  addressing  this  need  through  its 
scarce  resources  and  we  would  be  supportive  of  any  government 
initiative  in  this  area. 

In  closing,  I  would  like  to  express  our  appreciation  to  this  com- 
mittee for  the  focus  you  are  providing  on  this  disease.  We  need 
your  help  to  respond  to  this  new  and  devastating  problem. 

The  recognition  that  AIDS  appears  to  be  transmitted  through 
clothing  factor  concentrates  has  had  a  profound  effect  on  the  hemo- 
philiacs and  their  families.  Indeed,  AIDS  is  a  cloud  over  the  entire 
hemophiliac  community. 

I  thank  you  for  providing  us  with  the  opportunity  to  share  our 
views  with  you  today.  Thank  you  very  much. 

[The  prepared  statement  of  Mr.  Brownstein  follows:] 


53 


"nHENAnONAL 
HBADPHIUA  FOUNDAnON 


TESTIMO'JY   SUBMITTED   TO   THE   HOUSE   OF    REPRESENTATIVES 
INTERGOVERNMENTAL    RELATIONS   AND    HUMAN    RESOURCES   SUBCOMMITTEE 

OF   THE 
COMMITTEE   ON   GOVERNMENTAL   OPERATIONS 


HEMOPHILIA   AND    ACQUIRED    IMMUNE    DEFICIENCY   SYNDROME    (AIDS):    THE   FEDERAL    RESPONSE 


Statemefit  by:     The  National   Hemophilia  Foundation 

Alan  P.  Brownsteiii,  M.P.H.,  M.S.W. 

Executive    Director 

The   National  Hemophilia  Foundation 

August  1,   1983 


19  WEST  34th  STREET  •  SUITE  1204  •  NEW  YORK,  NEW  YORK  10OO1  •  (212)  563-0211 


54 


I  am  Alan  P.  Brownstein,  the  Executive  Director  of  The  National  Hemophilia  Foundation.  The  National 
Hemophilia  Foundation  is  made  up  of  48  chapters  tiroughout  the  country  and  is  the  only  national  organization 
in  the  United  States  that  is  exclusively  devoted  to  Improving  the  health  and  welfare  of  the  20,000  persons  with 
hemophilia  and  other  related  bleeding  disorders.  (Attached  to  the  testimony  is  a  brochure  that  briefly 
describes  hemophilia  and  the  work  of  the  Foun  Jation.) 

The  Foundation  is  most  grateful  for  the  support  that  Congress  has  provided  over  the  years  for  much  needed 
hemophilia  research  and  care.  As  you  are  aware,  this  support  has  facilitated  a  revolution  In  hemophilia 
treatment  over  the  last  ten  years.  Plasma  clotting  factor  concentrates  have  become  widely  available  and  home 
infusion  therapy  has  freed  these  patients  from  hos  lital  care  and  emergency  room  visits.  The  Committee  report 
accompanying  the  Budget  Omnibus  Reconciliati  )n  Act  of  1981  (H.R.3982)  concluded  ".  .  .  hemophilia 
treatment  is  one  of  the  biomedical  and  medical  success  stories  of  the  decade."  This  statement  is  based  on  clear 
cut  documentation  of  progress  in  hemophilia  trea:ment  over  the  past  eight  years.  I  ask  you  to  consider  the 
following  1981    data  as  compared  with  1975: 

-  the  number  of  patients  receiving  comprehensive   care  increased  more  than  350%; 

-  the  number  of  patients  on  home  care  nearly  quadrupled; 

-  hospital  utilization  is  down  more  than  80%  (average  hospital  days  per  year  reduced  from  9.4  to  1.8); 

-  the  percent  of  unemployed  adults  droppec   from  36%   to  12.8%;  and 

-  there  has  been  a  75%  reduction  in  the  number  of  days  lost  from  work  or  school  each  year. 

These  important  human  benefits  are  coupled  «ith  significant  economic  savings  -  careful  studies  have 
documented  a  62%  reduction  in  total  health  cost  p(  r  patient  ($1  5,800  per  year  in  1975;  $5,932  per  year  in  1981) 
for   the  9,500  hemophiliacs  enrolled   in  federally   subsidized   comprehensive   care  centers. 

Clearly,  the  advances  in  hemophilia  care  (i.e.,  aval  ability  of  AHF  concentrates,  comprehensive  care  and  home 
therapy)  have  enabled  hemophiliacs,  for  the  firsi  time  in  history,  to  lead  nearly  normal,  full  and  productive 
lives  -   a  truly  dramatic   turnaround  from  the   early   1970's. 

The   Impact  of  AIDS 

Now  we  are  faced  with  the  frightening  specter  of  AIDS  as  it  has  appeared  in  the  hemophilia  population. 
Although  in  absolute  terms  the  number  of  hemophiliacs  (16)  who  have  become  afflicted  with  AIDS  may  seem 
small,  the  risk  of  contracting  AIDS  is  far  greater  imong  hemophiliacs  than  any  other  risk  group.  Today,  of  the 
20,000  hemophiliacs,  one  out  of  1,250  has  contracted  AIDS.  Further,  if  you  consider  that  there  are 
approximately  7,500  hemophiliacs  who  are  classif  ed  as  severe,  who  are  far  more  dependent  on  blood  clotting 
products,  the  risk  is  much  greater  -  1  in  500.  It  is  indeed  ironic  that  the  very  substance  that  has  served  to 
liberate  hemophiliacs  from  the  disabling  aspects  of  their  disease  is  now  highly  suspect  as  the  source  of  AIDS 
infection.  To  those  with  hemopilia,  AIDS  repreS'Snts  the  makings  of  a  nightmare  -  a  lethal  threat  from  a 
mysterious  source.  Blood  clotting  factor  replacenent,  the  source  of  their  newly  found  freedom  from  pain  and 
disability,  has  changed  overnight  from  a  life  sust.iining  substance  to  a  possible  threat  to  their  survival.  The 
progress  of  two  decades  suddenly  became  a  "mixed  blessing". 

The  fear  of  AIDS  among  hemophiliacs  has  been  exacerbated  by  extensive  and  in  some  instances  distorted 
reporting  by  the  media.  In  many  respects  excess  fear  of  AIDS  among  some  hemophiliacs  has  presented  more 
risk  of  death  and  disability  than  AIDS  itself.  Some  patients  have  abandoned  appropriate  use  of  blood  products 
because  they  fear  contracting  AIDS.  This  is  l>ased  on  anecdotal  reports  from  patients  and  physicians, 
particularly  orthopedists,  who  have  reported  increased  joint  damage  resulting  from  Inadequately  treated 
bleeding  episodes.  This  concern  is  further  documented  by  reported  reductions  in  blood  clotting  factor  sales 
from  industry  and  reduced  blood  clotting  factor  use  from  treatment  centers.  This  is  an  inappropriate  response 
and  the  Foundation  is  now  making  major  efforts  to  urge  hemophiliacs  to  maintain  use  of  clotting  factor  in  the 


55 


treatment  of  hemorrhagic  episodes.  The  risks  of  not  treating  exceed  the  risks  of  contracting  AIDS  because 
uncontrolled  bleeding  is  the  leading  cause  of  death  among  hemophiliacs  not  to  mention  the  potential  of  serious 
orthopedic  complications  if  bleeding  episodes  are  untreated. 

The  fear  of  AIDS  has  other  tragic  implications.  No  longer  are  flu  symptoms  or  fever  passed  off  as  trivial 
problems.  Some  family  members  have  questioned  whether  physical  closeness  with  their  hemophilic  children  may 
be  dangerous.  Similarly,  sexual  partners  wonder  whether  intercourse  should  be  avoided.  How  sad  it  was  the 
other  oay  when  I  learned  from  one  of  our  chapters  that  their  hemophilia  camp  enrollment  was  down  75%  this 
year  because  parents  of  hemophilic  children  had  fear  of  their  children  being  exposed  to  other  children  with 

hemophilia.  We  are  now  beginning  to  get  reports  of  instances  in  the  workplace  where  fear  of  cor  trading  AIDS 
Is  expressed  by  those  working  side  by  side  with  hemophiliacs. 

Many  physicians  and  treatment  centers  are  deluged  with  calls  from  apprehensive  patients  and  f  imilies  seeking 
information  and,  of  course,  reassurance.  A  number  of  physicians  themselves  are  concerned  an<l  disagreement 
exists  among  experts  as  to  whether  or  not  treatment  should  be  modified.  Some  have  suggssted  that  the 
potential  for  reducing  the  risk  of  AIDS  would  be  increased  If  cryopreclpitate,  which  is  derived  from  smaller 
donor  pools  was  used  instead  of  the  dominant  replacement  therapy  now  in  use  -  AHF  concentmtes  which  are 
derived  from  much  larger  donor  pools.  Yet,  there  is  serious  question  raised  as  to  whether  or  not  this  would 
represent  a  safer  alternative  and,  of  course,  the  patients  are  caught  in  between  as  the  unc«rtainty  among 
physicians  compounds  the  distress.  Many  patients  are  fearful  that  their  treatment  may  b,.  changed  -  a 
perceived  threat  to  autonomy  gained  from  home  therapy  and  the  potential  of  being  set  back  two  decades  to  the 
old  sense  of  helplessness  and  dependence  upon  others. 

As  you  can  see,  the  Incidence  of  AIDS  among  hemophiliacs  is  of  serious  concern,  but  of  even  gre  iter  concern  Is 
the  profound  impact  of  the  threat  of  AIDS  for  all  hemophiliacs  throughout  the  country.  Because  It  Is  suspected 
that  this  dreadful  disease  Is  caused  by  a  transmissible  agent  that  can  be  spread  through  blood  products  we  urge 
that  the  public  sector  continue  and  expand  its  efforts  to  learn  more  about  the  spread  and  etiology  of  this 

The  Federal  Response  to  AIDS:     Current 

We  are  most  grateful  for  the  support  of  Congress  and  the  federal  agencies  Involved  with  AIDS.  All  of  the 
federal  agencies  Involved  with  AIDS  and  hemophilia  have  worked  closely  with  The  Natior.al  Hemophilia 
Foundation  during  this  difficult  period. 

The  Centers  For  Disease  Control  (CDC)  has  kept  us  Informed  of  all  new  AIDS  cases  and  hemDphllia  related 
developments.  They  have  been  sensitive  to  the  needs  of  our  constituents  by  providing  background  Information 
in  a  timely  way  so  that  we  have  ample  time  to  communicate  to  treatment  centers,  chapters  anc  patients.  This 
has  enabled  us  to  establish  the  Foundation  as  the  major  source  of  information  for  the  hemophilia  community. 
I  his  has  helped  a  great  deal  to  reduce  undue  alarm  that  results  from  misunderstanding  of  medis.  reports  about 
the  disease.  The  CDC  has  served  as  an  always  available  source  of  information  which  has  heloed  t  d  control  many 
unfounded  rumours  (and  there  have  been  many).  The  CDC  has  heavily  involved  the  input  of  our  medical 
expertise  and  is  working  in  collaboration  with  the  Foundation  on  two  major  studies. 

The  National  Institutes  of  Health  (NIH)  as  well  has  worked  closely  with  the  Foundation  and  has  relied  heavily 
upon  the  input  of  our  medical  experts. 

In  response  to  the  urgency  of  AIDS,  the  National  Heart.  Lung  and  Blood  Institute  (NHLBIj  has  provided 
Increased  funding  support  for  AIDS  research  and  has  successfully  compressed  the  peer  review  process,  without 
sacrificing  quality,  in  order  to  get  new  research  activity  moving  as  quickly  as  possible.  For  exan.pie,  a  study  of 
blood  product  use  and  genetic  and  Immunologic  factors  that  may  contribute  to  the  development  of  AIDS  was 
approved  (pending  final  determination  of  funds  needed)   In  a  short  time. 

NHUBl  has  also  Issued  an  RFA  on  July  15  to  develop  new  tests  for  determining  the  AIDS  carrier  state.  And,  at 
this  time,  an  RFP  is  being  prepared  for  a  prospective  epidemiologic  study  on  hemophilia  and  other  diseases 
requiring  blood  product  use.  It  is  expected  that  both  of  these  studies  will  be  operational  within  seven  months  of 


56 


issuance  of  :he  RFA/RFP.  We  are  impressed  with  this  responsiveness  because,  as  you  know,  the  peer  review 
process  usuj  lly  talces  much  longer.  It  is  clear  to  us  the  NHLBI  has  been  active  in  generating  ideas  as  well  as 
committing  resources  to  seeking  new  scientific  thinking. 

One  of  the  problems  regarding  research,  according  to  our  medical  advisors,  is  directly  related  to  the 
complexitic!  of  this  disease.  Because  of  the  many  unknowns,  it  has  been  difficult  for  the  scientific  community 
to  develop  a  well  focused  research  strategy. 

Last  January,  The  National  Hemophilia  Foundation's  Medical  and  Scientific  Advisory  Council  issued  a  series  of 
recommend;  tions  (full  text  of  January  14,  1983  recommendations  attached)  to  prevent  AIDS  in  patients  with 
hemophilia.  One  of  those  recommendations  urged  as  a  precautionary  measure  that  those  who  might  transmit 
AIDS  shoulc  be  excluded  from  blood  donation.  The  Public  Health  Service  (PHS),  with  the  involvement  of  CDC 
and  the  Food  and  Drug  Administration  (FDA)  issued  a  series  of  recommendations  directed  at  discouraging 
blood  donation  from  high  risk  groups.  And,  most  recently,  the  FDA's  Office  of  Biologies  held  a  meeting  on  July 
19  to  discuss  the  safety  and  purity  of  plasma  products  with  specific  attention  directed  at  recall  of  plasma 
derivatives  n  situations  where  a  donor  is  identified  as  an  AIDS  patient  or  has  symptoms  of  AIDS.  There  was 
agreement    ibout  having  ongoing  discussion   concerning  newly  reported   cases  of  suspect  donors. 

And  lastly,  the  Office  of  Maternal  and  Child  Health  (OMCH),  which  has  responsibility  for  the  federal 
hemophilia  treatment  center  program,  has  been  supportive  of  all  of  our  efforts  concerning  AIDS.  OMCH  was 
very  helpful  in  assisting  us  in  our  collaborative  survey  with  CDC  of  all  treatment  centers  in  the  nation.  Further, 
efforts  are  being  made  to  identify  resources  to  bring  treatment  center  directors  together  in  the  Fall  to  discuss 
AIDS  and  its  impact  on  treatment. 

In  summary,  we  are  pleased  with  the  support,  sensitivity  and  sense  of  urgency  demonstrated  by  the  various 
branches  of  the  PHS. 

The  Federal  Response  to  AIDS:     Future 

Yhe  needs  that  have  been  created  by  the  AIDS  crisis,  in  our  view,  will  require  more  federal  support  in  the  years 

ahead.  Because  hemophiliacs  require  blood  products  for  their  very  survival  and  because  these  blood  products 

have  the  po  .ential  for  AIDS,  the  hemophiliac  has  a  special  interest  in  efforts  to  understand  and  control  this 

disease. 

A.  Researi:h  -  The  National  Hemophilia  Foundation  considers  research  in  this  area  to  be  a  matter  of  highest 
priority  and   we  urge  you  to  give  this  problem  your  most  serious  consideration: 

-  adequiite  funding  should  be  provided  to  the  CDC  to  expand  its  epidemiologic  investigation  and  laboratory 
studiei  of  AIDS;  and 

-  major  increases  in  allocations  to  the   NIH   are  needed  to  study  the  etiology  of  AIDS. 

In  recent  years,  NIH  funding  has  not  kept  pace  with  inflation.  Basic  research  is  fundamental  in  helping  us  to 
learn  more  about  this  disease.  In  addition,  the  special  urgency  represented  by  AIDS  requires  specific  funding 
support.  Th«  recent  enactment  of  the  Public  Health  Emergency  Research  Act  (H.R.2713)  provides  up  to  $30 
million  for  tie  purposes  of  having  the  financial  reserve  capacity  to  address  public  health  emergencies  such  as 
AIDS.  We  ur  ge  that  appropriations  be  made  at  the  $30  million  level,  so  that  funding  will  be  available  as  new 
research  direction  is  defined  for  AIDS.  We  also  urge  that  efforts  continue  to  review  research  proposals  as 
rapidly  as  possible  without  undermining  the  quality  of  the  peer  review  process. 

B.  Treatment  Center  Funding  -  The  AIDS  crisis  has  created  a  need  for  comprehensive  care  that  is  greater 
than  ever  before.  An  informal  sampling  has  revealed  a  25%  to  35%  increase  in  patient  encounters  at  many 
comprehensive  care  centers  and  this  is  specifically  du«  to  concern  about  AIDS.  Physicians  and  nurses  are 
seeing  patieits  much  more  frequently  as  patients  are  being  more  carefully  examined  and  tested  for  AIDS  type 
symptoms;  patients  require  more  education  concerning  the  risks  and  their  fears;  as  well  as  treatment  of  actual 
AIDS  cases.     This  increased  demand  for  care  is  most  difficult  because  most  of  these  treatment  centers  are 


57 


©periling  on  a  shoestring  budget  after  being  cut  bacic  22%  last  year. 

We  urge  an  additional  $2  million  of  new  funding  to  be  earmarked  for  the  hemophilia  treatment  center  program 
for  a  total  of  $4.6  million  for  fiscal  year  1984.  This  additional  funding  is  essential  if  we  are  to  adequately 
address  this  new  AlDS-lnduced  need  for  services  for  those  who  are  currently  enrolled  in  comprehensive  care 
centers.  Thrs  would  also  provide  a  modest  expansion  of  comprehensive  care  to  those  states  that  are  not 
currently  part  of  the  federal  treatment  center  network. 

£.  Patient  and  Provider  Education-  Because  there  is  so  much  misunderstanding  about  AIDS  and  hemophilia 
t  is  important  that  funding  be  provided  to  expand  the  flow  of  accurate  information  to  physicians  and  patients 
throughout  the  country  in  order  to  improve  patient  care  and  to  coordinate  research  activity.  Such  an 
information  network  would  also  serve  to  collect  hemophilia  specific  AIDS  related  data,  survey  and  disseminate 
information  concerning  product  use  and  new  forns  of  treatment.  Currently,  The  National  Hemophilia 
Foundation  is  partially  addressing  this  need  through  its  scare  resources.  The  National  Hemophilia  Foundation 
would  be  supportive  to  any  government  initiative  in  tills  area.  Active<li$cussion  is  currently  underway  with  the 
OMCH  for  potential  funding  in  this  area. 


In  closing,  I  would  like  to  express  our  appreciation  to  this  Committee  for  the  focus  you  are  providing  on  this 
disease.  We  need  your  help  to  respond  to  this  new  and  potentially  devastating  problem. 

The  recognition  that  AIDS  appears  to  be  transmitted  through  clotting  factor  concentrates  has  had  a  profound 
effect  on  hemophiliacs  and  their  families  throughout  the  country.  AIDS  is  a  cloud  over  the  entire  hemophilia 
community. 

Thank  you  for  providing  us  with  the  opportunity  to  share  our  views  with  you  today. 
August  1,  1983 


58 


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Recommendations  of 
the  Medical  and  Scientific 
Advisory  Council  submitted 
to  ttie  NHF  Board  of  Directors 


THENAnONAL 
HB/KDPHIUA  FOUNDAnON 


THE  NATIONAL  HEMOPHILIA  FOUNDATION 

MEDICAL  AND  SCIENTIFIC  ADVISORY  COUNCIL 

January  14,  1983 

RECOMMENDATIONS  TO  PREVENT  AIDS  IN  PATIENTS  WITH  HEMOPHILIA 

L        Recommendations  for  physicians  treating  patients  with  hemophilia. 

A.       It  is  recommended  that  cryoprecipitate  be  used  to  treat  patients  in  the  foUowing 
groups  except  when  there  is  an  overriding  medical  mdieation: 

newborn  infants  and  children  under  4;  ,„  ..    » 

newly  identified  patients  never  treated  with  factor  vm  concentrate; 
patients  with  cUnically  mild  hemophUia  who  require  infrequent  treatment. 
Similar  guidelines  should  be  appUed  to  factor  IX  deficiency  patients  where  fresh 
frozen  plasma  can  be  used  instead  of  concentrate. 
B        The  potential  advantages  and  disadvantages  of  cryoprecipitate  versus  factor  VE 
concentrate  therapy  for  severe  hemophUia  A  are  not  clear  at  the  present  time  ana 
are  controversial.    The  Medical  and  Scientific  Advisory  Council  does  not  offer  a 
specific  recommendation  at  this  time,  but  will  continue  to  review  the  data. 

C.  DDAVP   shoiUd   be   used   whenever   possible   in   patients   with   mUd   or   moderate 
hemophilia  A. 

D.  AU  elective  surgical  procedures  should  be  evaluated  with  respect  to  the  possible 
advantages  or  disadvantages  of  a  delay. 

n.       Recommendations  to  factor  Vm  concentrate  manufacturers: 

A.      Serious  efforts  should  be  made  to  exclude  donors  that  might  transmit  AIDS.  These 
should  include: 

1  Identification,  by  direct  questioning,  individuals  who  belong  to  groups  at  high 
risk  of  transmitting  AIDS,  specifically  male  homosexuals;  mtravenous  drug 
users;  and  those  who  have  recently  resided  in  Haiti. 

2.  Evaluation  and  implementation  (if  verified)  of  surrogate  laboratory  tests  that 
would  identify  individuals  at  high  risk  of  AIDS  transmission. 

3  In  addition,  the  manufacturers  should  cease  using  plasma  obtained  from  donor 
centers  that  draw  from  population  groups  in  which  there  is  a  significant  AIDS 
incidence.  It  is  clear  from  the  epidemiologic  data  that  the  pool  of  mdividuals 
at  risk  for  AIDS  transmission  is  not  uniform  throughout  the  country  and  that  a 
great  deal  could  be  achieved  by  excluding  donors  from  the  "hot  spots". 
B        Efforts  should  be  continued  to  expedite  the  development  of  processing  methods 

that  will  inactivate  viruses  potentially  present  in  factor  vm  concentrates. 


!  WEST  34th  STREET  •  SUITE  1204  »  NEW  YORK.  NEW  YORK  10001  •  (212)  563-0211 


61 


C.  There  should  be  an  evaluation  of  the  possibility  that  iJiij  yield  of  factor  VIII  in 
pheresis  donors  could  be  increased  using  DDAVP  or  ercercijo  co  rrax;nize  yield. 
This  would  permit  a  reduction  in  the  si^e  cf  tl.e  uor.or  pool  nrd  voiu'c"  compensate 
for  losses  in  plasma  that  might  occur  due  to  iteps  re  ted  ioovs. 

D.  There  should  be  an  evaluation  of  the  feasibility  of  fractionating  and  processing 
plasma  so  that  lyophilized  small  pool  products  are  available.  While  this  will 
certainly  be  more  costly,  it  may  be  the  only  way  to  break  out  of  the  present 
dilemma  without  going  to  an  all-cryoprecipitate  effort. 

E.  Concentrate  manufacturers  should  immediately  cease  purchase  of  recovered 
plasma  for  factor  VIH  concentrate  from  blood  centers  that  do  not  meet  the  criteria 
listed  in  n  A  above.  These  criteria  should  also  apply  to  the  production  of 
cryoprecipitate. 

F.  Manufacturers  should  accelerate  efforts  towards  the  production  of  coagulation 
factor  concentrates  by  recombinant  DNA  technology. 

in.      Recommendations  to  regional  and  community  blood  centers: 

A.  Those  centers  that  are  in  regions  in  which  there  is  a  very  low  incidence  of  AIDS 
should  increase  capacity  for  cryoprecipitate  production  to  be  used  locally  and  in 
other  regions. 

B.  These  centers  should  evaluate  the  feasibility  of  preparing  small  pool  lyophilized 
cryoprecipitate  for  hemophilia  treatment. 

C.  The  production  of  cryoprecipitate  should  also  adhere  to  criteria  detailed  in  HA, 
above. 


26-097    0-83 5 


62 


THE  NATIONAL 
HBOPHIUA  i=OUNDA"nON 


HEMOPHILIA    AND   ACQUIRED    IMMUSE    DEFICIENCY   SYNDROME   (AIDS) 

■  FACT  :;heet 

FEDERAL  SUPPORT   NEEDS 


-  FULL  FUNDING  FOR  EPIDKMIOLOGIC  INVESTIGATION  AND 
LABORATORIES  STUDIES   (CDC); 

-  FULL  FUNDING  FOR  BASIC  BIOMEDICAL  RESEARCH,  AIDS- 
SPECIFIC  FUNDING  AND  $30I<11LLION  APPROPRIATION  FOR  THE 
PUBLIC   HEALTH    EMERGENCY    ACT    (NIH); 

-  $4.6  MILLION  ($2  MILLION  NEW  FUNDING)  TO  SUPPORT 
HEMOPHILIA  TREATMENT  C:ENTER  PROGRAM  TO  MEET  THE 
INCREASED  DEMAND  FOR  SERVICES  DUE  TO  AIDS  (OMCH);  AND 

-  FUNDING  FOR  PATIENT  AND  PROVIDER  EDUCATION  RELATED 
TO   AIDS. 

I.  HEMOPHILIA  -  WHAT  IT  IS  -  Hemophilia  is  a  lifelong,  hereditary  blood  clotting  disorder  which  affects 
males  almost  exclusively.  Hemophiliacs'  blood  does  not  clot  due  to  the  inactivity  of  a  plasma  protein  ,n  their 
blood.  Hemophiliacs  may  experience  uncontrolled,  painful  bleeding  and  hemorrhaging.  Chronic  joint  bleeding 
results  in  progressive  joint  damage  and  crippling  without  adequate  treatment. 

II.  INCIDENCE  OF  AIDS-  Sixteen  cases  of  AIDS  confirmed,  nine  deceased.  This  represents  a  rate  of  one 
out  of  1,250  hemophiliacs  with  AIDS.  Among  hemophilics  who  are  classified  as  severe,  the  rate  is  one  ,n  500. 

Ill  IMPACT  OF  AIDS  -  Since  the  early  1970's,  the  advances  in  hemophilia  care  have  enabled  hemophiliacs, 
for  the  first  time  in  history,  to  lead  nearly  normal,  full  ind  productive  lives.  Now  this  population  is  faced  with 
the  frightening  specter  of  AIDS.  Blood  clotting  factor  replacement,  the  source  of  their  newly  found  freedom 
from  pain  and  disability,  has  changed  overnight  from  2  life  sustaining  substance  to  a  possible  threat  to  their 
survival.  The  fear  of  AIDS  has  tragic  implications.  Some  hemophiliacs  have  abandoned  use  of  blood  products 
even  though  the  risks  of  not  treating  exceed  the  risks  oV  contracting  AIDS  because  unconrolled  bleeding  is  the 
leading  cause  of  death  among  hemophiliacs,  which  ii  compounded  by  the  potential  of  serious  orthopedic 
implications  if  bleeding  episodes  are  not  treated. 

IV.  RESEARCH  HEMOPHILIA,  AND  AIDS  -  Bec»jse  hemophiliacs  depend  upon  a  factor  derived  from 
blood  plasma,  they  are  vulnerable  to  anything  that  may  contaminate  blood  products.  More  research  ana 
epidemiologic  work  needs  to  be  done  to  reduce  the  spread  of  Al  DS  and,  in  the  long  run,  to  reduce  other  risks  of 
blood  infectivity  in  the  future.  Such  research  will  benefit  the   general  public  as  well  as  hemophiliacs. 

V.  HEMOPHILIA  TREATMENT  AND  AIDS  -  Due  to  AIDS,  the  need  for  comprehensive  care  is  greater  than 
ever  before.  Physicians  and  nurses  are  seeing  patients  much  more  frequently  and  the  need  for  psychosocial 
Intervention  has  greatly  increased. 

Vi.  PATIENT/PROVIDER  EDUCATION  AND  AIDS  -  Because  there  is  so  much  misunderstanding  about 
AIDS  and  hemophilia,  it  is  important  that  funding  be  piovided  to  expand  the  flow  of  accurate  information  to 
physicians  and  patients. 

August,   1983 

19  WEST  34th  STREET  •  SUITE  1204  •  NEW  YORK,  NEW  YORK  10001  •  (212)  563-0211  . 


63 

Mr.  Weiss.  I  want  to  thank  all  of  you  for  your  testimony.  It  has 
been  very  effective,  eloquent,  and  factual. 

I  also  want  to  thank  each  of  you  for  summarizing  and  highlight- 
ing your  testimony.  Your  prepared  statements  will  all  be  entered 
into  the  record.  I  hope  that  not  only  members  of  this  committee, 
but  Members  of  the  House  and  the  general  public  will  take  occa- 
sion to  read  those  full  statements  because  they  are  filled  with  a 
wealth  of  factual  information  and  analysis  that  go  far  beyond  the 
summaries  which  we  asked  you  to  make  in  the  interests  of  saving 
time. 

We  will  again  adhere  to  the  5-minute  rule  and  go  around  as 
many  times  as  is  necessary  to  cover  all  the  questions  that  members 
have. 

Ms.  Apuzzo,  in  the  course  of  your  testimony  you  stressed,  as  did 
some  of  the  witnesses  prior  to  your  testimony,  the  issue  of  confi- 
dentiality. And  as  you  may  know,  for  some  8  to  10  weeks  this  sub- 
committee has  been  attempting  to  get  access  to  factual  information 
from  the  Centers  for  Disease  Control  and  other  component  agencies 
of  HHS.  HHS  has  repeatedly  raised  the  issue  of  confidentiality, 
claiming  they  were  not  confident  that  the  subcommittee  would 
adhere  to  the  requirements  of  confidentiality. 

We  have  taken  great  pains,  as  I  said  in  my  opening  statement,  to 
assure  and  reassure  the  Department  that,  in  fact,  we  had  no  inter- 
est in  learning  the  names  of  people  afflicted  with  AIDS.  They  were 
not  necessary  for  our  oversight  work.  Indeed  the  last  thing  that  we 
did  was  to  provide  a  detailed  system  for  CDC  to  excise  whatever 
names  may  be  in  those  files  and  to  assure  that  our  people  would 
never  get  to  see  them. 

We  still  have  not  gotten  access  to  the  files,  incidentally. 

I  give  you  all  that  background  because  I  really  had  not  known 
until  I  read  your  testimony  the  extent  to  which  CDC  has  been 
using  the  other  side  of  the  argument  in  refusing  to  recognize  the 
concerns  that  the  community  at  risk,  which  you  represent,  had 
about  questions  of  confidentiality. 

I  find  that  to  be  the  height  of  cynicism;  in  the  one  instance  to  be 
using  the  confidentiality  argument  to  obstruct  the  work  of  their 
oversight  subcommittee  and,  at  the  same  time,  to  refuse  to  recog- 
nize the  legitimate  confidentiality  concern  which  you  have  ex- 
pressed. 

Would  you  go  into  some  greater  detail  as  to  what  efforts  you 
have  made  to  work  out  the  confidentiality  issue  with  CDC? 

Ms.  Apuzzo.  Yes,  Mr.  Chairman. 

It  is  necesary  to  provide  you  with  some  sense  of  what  our  com- 
munities are  dealing  with  in  their  various  locales.  In  New  York, 
early  on  confidentiality  became  an  issue  of  enormous  concern  to  us, 
an  issue  relating  to  the  blood  question,  and  in  the  context  of  epi- 
demiology. 

We  have  attempted  in  our  own  networks  to  raise  the  conscious- 
ness of  our  community  about  the  necessity  of  being  as  cooperative 
as  possible  in  reaching  a  resolution  of  AIDS.  But  again  and  again, 
as  Mr.  Callen  pointed  out,  the  community  has  had  to  acknowledge 
that  there  was  no  premise,  no  substance,  no  basis  upon  which  to 
provide  information  to  a  government  that  in  fact  denies  us  job  se- 
curity— in  24  States  we  are  illegal,  sir — denies  us  the  opportunity 


i 


64 

to  serve  in  the  military,  denies  us  the  opportunity  to  raise  our  own 
children,  denies  us  an  opportunity  to  teach  other  people's  children. 

You  must  understand  the  reality  of  our  lives.  When  that  Govern- 
ment— CDC,  NIH,  any  other  Government  institution — comes  to  us, 
asks  us  questions  that  in  fact  represent  illegalities  in  I  believe  24 
States — you  must  understand  that  it  is  not  paranoia.  It  is  the  very 
real  fear  of  our  lives  that  has  raised  our  concerns  here. 

We  have  worked  in  locales  and  then  had  an  opportunity  in 
Denver  to  come  together  at  a  gay  lesbian  health  conference,  where 
I  chaired  a  public  policy  seminar.  At  that  particular  seminar,  we 
had  paradigms,  constructions,  that  we  had  worked  out  with 
Lambda  legal  defense  to  demonstrate  that  we  would  be  willing  to 
provide  all  the  information  essential,  providing  confidentiality 
would  be  assured,  that  providing  that  CDC  and  Government  would 
enter  into  an  agreement  to  assure  us  that  in  fact  this  information 
would  not  be  used  to  sabotage  our  lives  in  the  future. 

We  have  not  been  able  to  get  to  first  base  in  our  negotiating  with 
CDC  to  utilize  this  kind  of  a  system.  And  so  it  is  only  as  a  last 
resort  that  we  come  requesting  that  legislation  be  considered  that 
would  guarantee  not  only  thoroughness  in  that  vital  area  of  epi- 
demiology, but  the  security  needed  so  that  persons  could  respond  to 
questions  and  could  guarantee  integrity  about  that  data  that  we  so 
desperately  need.  That  has  been  just  a  bit  of  our  experience. 

Mr.  Weiss.  Thank  you  very  much. 

Dr.  Compas,  in  the  course  of  your  ter.timony,  you  indicated  that 
in  New  York  City  the  Department  of  Health  has  now  removed  Hai- 
tians as  a  special  category  of  communities  or  groups  at  risk.  You 
have  indicated  that  has  not  yet  happened  with  CDC  at  the  national 
level. 

Have  you  engaged  in  any  discussions  or  are  there  discussions  on- 
going regarding  CDC  following  through  on  a  similar  kind  of  deter- 
mination? 

Dr.  Compas.  Yes.  In  fact,  we  have  started  to  discuss  with  CDC 
more  than  a  year  ago.  Two  or  three  weeks  ago  we  have  met  with 
Dr.  Joyce  Johnson,  who  is  supposed  to  be  the  chief  epidemiologist 
for  epidemiological  research  in  the  Haitian  community.  We  told 
her  what  we  consider  as  a  weakness  in  those  studies  upon  which 
the  classification  is  done. 

What  we  have  found  is  that,  as  I  have  said  in  my  testimony, 
most  of  the  patients  were  interviewed  by  Americans,  who  don't 
know  the  Haitian  culture,  don't  speak  Creole,  don't  speak  French 
at  all.  Those  patients  are  undocumented,  what  they  call  "illegal 
aliens." 

They  came  to  their  bed,  asking  questions  like:  are  you  homosex- 
ual, drug  addicts,  all  things  that  are  supposed  to  be  illegal.  The 
answer  was  always  no.  What  we  have  told  the  CDC  is  that  the  in- 
terviewers should  be  Haitians,  people  who  do  understand  the  cul- 
ture of  the  patients  and  who  can  communicate  properly  with  the 
patients. 

In  New  York  City,  Dr.  Sencer  understood  what  we  have  told  him, 
he  is  a  very  scientific  man.  On  the  basis  of  what  we  have  found  in 
New  York,  he  decided  to  remove  the  Haitians  from  the  high-risk 
group.  The  CDC,  in  their  article  in  the  New  York  Times  yesterday, 


65 

said  that  they  are  not  going  to  remove  the  Haitians  on  their  list, 
and  also  they  are  not  going  to  use  any  Haitian  interviewers. 

In  fact,  somebody  said,  Dr.  Fishee  I  think  from  Miami,  she  said 
she  doesn't  believe  that  Haitians  should  interview  Haitians,  which 
is  in  our  opinion  totally  unscientific.  If  you  are  dealing  with  people 
who  are  in  a  different  catergory,  have  a  different  culture,  you  have 
to  use  agents  who  know  this  culture. 

I  feel  in  the  gay  community  here,  the  people  who  are  interview- 
ers were  Americans,  they  share  the  same  culture  as  the  gay  com- 
munity, they  have  some  differences — but  basically  the  cultural 
background  is  the  same.  And  we  do  feel  it  should  be  the  same  for 
Haitians. 

Mr.  Weiss.  Thank  you  very  much. 

Mr.  Walker? 

Mr.  Walker.  Thank  you,  Mr  Chairman. 

Ms.  Apuzzo,  I  understand  from  the  chairman  now  that  your  writ- 
ten record,  your  written  remarks  have  been  submitted  for  the 
record. 

Ms.  Apuzzo.  Yes,  sir. 

Mr.  Walker.  And  I  assume,  then,  that  questions  about  those 
written  remarks  are  in  order  as  well  as  what  you  delivered. 

Ms.  Apuzzo.  To  the  best  of  my  ability  I  will  attempt  to,  sir. 

Mr.  Walker.  Fine,  thank  you. 

On  page  3,  you  make  the  allegation  or  the  suggestion  that  dis- 
crimination, either  racial  or  otherwise,  is  being  pursued  against 
people  with  AIDS.  And  you  suggest  rather  vividly  that  someone  in 
the  Government  thinks  that  AIDS  victims  are  expendable. 

Those  charges  are  pretty  sensational,  and  they  are  pretty  seri- 
ous. What  I  would  ask  you,  since  they  are  on  the  record,  is  if  you 
could  provide  us  with  the  names  of  any  Government  officials  who 
you  think  are  guilty  of  such  acts,  and  if  you  could  give  specific  inci- 
dents that  have  led  you  to  make  such  serious  allegations. 

Ms.  Apuzzo.  Yes,  sir. 

Let  me  say  that  I  will  provide  you  with  additional  data.  But  let 
me  say  this,  sir:  In  the  last  year  the  blood  issue,  as  we  have  heard 
from  our  representative  from  the  hemophilia  community,  this  last 
year  the  gay  community  and  other  communities,  the  Haitian  com- 
munity, have  been  essentially  standing  out  there  on  a  limb  where 
the  blood  issue  has  been  concerned. 

If  you  will,  sir,  it  was  1  year  ago,  that  Dr.  Curran  came  to  New 
York  and  identified  the  blood  issue  as  a  very  volatile  issue. 

There  is  no  need  to  demonstrate  to  you,  I  think,  the  amount  of 
stigmatization  associated  with  the  term  "gay  blood,  bad  blood."  I 
think  it  pretty  much  speaks  for  itself. 

In  that  year,  we  have  headline  after  headline  after  headline  that 
suggested  that  the  blood  supply  in  this  country  was  being  contami- 
nated by  homosexuals.  The  homosexual  community  has  responded 
with  what  I  consider  to  be  unprecedented  force  and  unprecedented 
commitment,  to  educate  itself,  educate  itself  long  before  the  media 
took  up  the  question  of  AIDS. 

If  you  look  back  at  the  publications  in  this  community  over  the 
last  2  to  3  years,  you  will  find  that  each  publication,  many  of  which 
are  circulated  free  of  charge,  have  made  every  attempt  to  bring  to 
the  gay  community  the  latest  information,  attempting  to  get  the 


66 

gay  community  politicized,  to  be  able  to  apply  pressure,  and  beyond 
that,  in  light  of  this  blood  crisis,  attempting  to  demonstrate  to  our 
community  a  responsible  response  to  what  was  being  told  to  us. 

In  that  12-month  period,  sir,  we  have  been  left  hanging  out  on  a 
limb. 

Increasingly,  headlines  have  alleged  that  we  were  simply  looking 
to  be  obstreperous  or  failing  to  cooperate  with  a  life  and  death  situ- 
ation. 

I  maintain,  sir,  that  the  lethargy  with  which  the  Federal  Govern- 
ment has  responded  has  made  many  of  us  victims  of  redtape,  as  we 
heard  earlier. 

That  kind  of  vulnerability  to  a  community  that  is  already  vul- 
nerable, has  resulted  in  outbreaks  of  violence  against  gay  people, 
which  I  can  document  and  give  you  names. 

I  don't  know  the  facts  about  how  much  research  is  actually  going 
on,  despite  the  fact  that  I  have  asked  for  it  consistently.  I  don't 
know  today  what  programs  are  going  on  where. 

I  have  information  to  the  fact  that  in  this  1-year  period,  despite 
the  fact  that  Dr.  Curran  came  to  us  a  year  ago  and  identified  the 
volatile  issue  of  blood,  there  is  now  $56,000  in  one  program  seeking 
to  find  a  resolution  of  the  blood  issue,  which  has  left  us  very  vul- 
nerable. 

Mr.  Walker.  I  thank  you,  and  I  hope  you  will  provide  us  for  the 
record  with  the  specific  incidents  to  which  you  refer. 

If  I  understand,  though,  in  your  testimony,  I  did  not  hear  the 
names  of  any  Government  officials  specified  here.  You  were  evi- 
dently indicating  or  expressing  the  attitude  that  AIDS  victims  are 
expendable. 

There  are  such  Government  officials? 

Ms.  Apuzzo.  Sir,  when  a  government  fails  to  respond  to  an  issue 
that  is  resulting  in  the  loss  of  life,  it  is  convenient  not  to  be  able  to 
find  a  single  individual. 

It  is  convenient  to  blame  it  on  a  system,  but  that  system,  in  fact, 
has  been  something  less  than  just  lethargic  in  responding  to  our 
need,  something  less  than  just  lethargic  to  responding  to  our  cry 
for  assistance,  and  what  I  would  consider  to  be  an  attempt  to  co- 
operate. This  community  has  approached  the  Government  consist- 
ently, attempting  to  cooperate  and  be  a  part  of  the  process  with  the 
Government.  Rarely  has  that  offer  been  accepted. 

Mr.  Walker.  I  was  going  to  ask  you  to  go  beyond  the  systemic 
problem  and  identify  the  specifics. 

Ms.  Apuzzo.  I  think,  sir,  when  fully  6  months  ago  I  asked  Dr. 
Curran,  in  the  company  of  representatives  from  the  Lambda  Legal 
Defense,  over  the  telephone,  for  a  report  that  would  demonstrate  to 
us  exactly  what  programs  were  in  effect,  what  their  costs  were, 
what  professional  personnel  were  assigned,  and  what  the  clerical 
support  were  for  each  of  those  programs,  and  I  did  not  get  an 
answer;  and  2  months  later  I  wrote  a  letter  to  Dr.  Brandt;  2 
months  ago,  I  wrote  to  Secretary  Heckler  and  still  do  not  have  an 
answer.  That  is  a  6-months'  lag,  and  if  we  don't  know  what  the 
Government  is  actually  doing,  how  can  we  responsibly  know  what 
it  is  to  ask  for? 

Mr.  Walker.  You  mentioned  on  three  occasions.  Dr.  Curran.  Are 
you  accusing  Dr.  Curran  of  engaging  in  racial  or  other 


67 

Ms.  Apuzzo.  The  issue  has  to  do  with  the  fact  that  the  victims  of 
AIDS,  40  percent  of  the  victims  of  AIDS,  are  people  of  color. 

The  longer  the  situation  is  allowed  to  persist,  the  more  vulner- 
able the  population  is. 

Mr.  Walker.  OK.  I  am  trying  to  get  to  some  specifics  here, 
though. 

Are  you  accusing  Dr.  Curran  of  engaging  in  discrimination  or  in 
treating  the  problem  as  though  AIDS  victims  are  expendable? 

Ms.  Apuzzo.  I  am  accusing  the  entire  system,  sir,  of  failing  to  re- 
spond with  the  same  speed  and  the  same  commitment  that  might 
have  been  its  motivation,  if  those  persons  who  were  vulnerable  to 
AIDS  were,  in  fact,  a  member  of  another  sociological  group. 

Mr.  Weiss.  If  the  gentleman  will  allow,  7  minutes  have  elapsed. 
We  will  come  back  for  a  second  round. 

Mrs.  Boxer? 

Mrs.  Boxer.  Mr.  Brownstein,  do  you  feel  that  there  should  be  a 
way  to  develop  a  test  so  we  can  tell  from  a  blood  sample  if  it  car- 
ries AIDS  disease? 

Mr.  Brownstein.  Absolutely;  yes.  We  have  supported  that  as 
being  the  best  way  of  preventing  AIDS  until  we  learn  more  about 
how  this  disease  is  spread,  and  what  it  is;  there  should  be  some 
sort  of  a  test. 

Mrs.  Boxer.  Do  you  know  at  this  time  whether  such  research  is 
going  on  in  the  Federal  Government? 

Mr.  Brownstein.  Yes,  it  is.  The  Centers  for  Disease  Control  is 
exploring  different  types  of  tests,  and  also  an  RFA  has  been  issued 
by  NHLBI  to  determine,  to  learn  more  about  the  AIDS  carrier 
state,  and  should  be  operational  at  the  beginning  of  1984,  and  hope- 
fully this  will  provide  new  information  about  what  kind  of  testing 
should  be  applied  to  the  blood. 

Mrs.  Boxer.  What  does  the  Government,  if  you  know  this,  spend 
on  research  on  hemophilia? 

Mr.  Brownstein.  OK. 

Mrs.  Boxer.  What  did  it  spend  in  the  height  of  the  research 
effort? 

Mr.  Brownstein.  I  cannot  answer  that  specifically.  One  of  the 
problems  is  that  there  are  so  many  areas  that  are  related  to  hemo- 
philia; much  of  genetic  research  is  related  to  hemophilia,  as  is 
much  of  the  research  related  to  joint  diseases,  and  so  on;  so  it  is 
difficult  to  pinpoint  a  specific  number,  but  we  do  receive  printouts 
from  the  various  Institutes  of  the  NIH,  so  that  the  Foundation  and 
its  medical  research  advisory  group  can  keep  tabs  on  what  is  going 
on  in  different  places,  and  I  would  be  glad  to  share  that  informa- 
tion with  you  after  this  hearing. 

Mrs.  Boxer.  You  can't  give  me  a  ballpark  figure  as  to  how  much 
research  money  is  spent  specifically  through  the  Hemophilia  Foun- 
dation, so  we  can  try  to  get  a  handle  on  that  kind  of  information? 

Mr.  Brownstein.  Specifically,  through  The  National  Hemophilia 
Foundation,  there  is  about  $100,000  of  research. 

NHF  is  a  small  foundation.  That  is  private  nongovernmental 
funds  supplemented  by  about  $30,000  of  Government  funds. 

Mrs.  Boxer.  So  you  feel,  I  would  assume,  above  and  beyond  that, 
we  would  need  to  put  more  funds  into  the  testing  of  blood  to  pick 
up  the  AIDS  disease? 


68 

Mr.  Brownstein.  Absolutely. 

Mrs.  Boxer.  Have  you  quantified  how  many  dollars  it  would  take 
just  on  that  research  effort  alone?  Any  ideas  on  that? 

Mr.  Brownstein.  No,  but  we  can  furnish  that  information  to  this 
committee,  should  it  be  desirable. 

Mrs.  Boxer.  I  would  appreciate  that. 

[The  information  follows:] 


69 


THE  NATIONAL 
HEMOPHILIA  FOUNDATION 


September  7,  1 983 


Honorable  Barbara  Boxer 

U.S.  House  of  Representatives 

1517  Longworth  House  Office  Building 

Washington,  DC  20515 

Dear  Ms.  Boxer: 


I  am  most  pleased  with  the  interest  you  have  taken  concerning  the  serious 
matter  of  Acquired  Immune  Deficiency  Syndrome  (AIDS)  and  your  participation 
in  the  hearing  that  was  conducted  on  August  1-2  by  the  House  Intergovernmental 
Relations  Subcommittee. 

Mr.  Alan  P.  Brownstein,  Executive  Director  of  the  National  Hemophilia 
Foundation^  reques ted  that  I  respond  to  a  question  that  you  had  asked  concerning 
the  development  of  a  blood  test  to  detect  the  AIDS  carrier  state.   As  1  am  sure 
you  can  appreciate,  there  are  many  variables  (including  chance)  that  would 
affect  the  amount  of  time  and  funding  support  that  would  be  required  to  develop 
a  test  that  was  sufficiently  specific  and  sensitive  to  detect  AIDS  or  markers 
for     AIDS  in  individuals  who  were  asymptomatic  but  whose  blood  was  potentially 
infectious.   In  my  opinion,  the  first  step  would  be  to  develop  a  collection 
of  white  cells  and  plasma  from  a  large  number  of  individuals  at  high  risk  for  the 
development  of  AIDS  and  analyze  these  stored  samples  when  AIDS  developes  in  those 
who  donated  these  blood  samples.   Given  the  long  incubation  period  associated 
with  AIDS,  this  would  require  at  least  2  -  it  years  and  a  $2  -  5  million 
investment.   The  specific  cost  of  such  a  study  would  depend  upon  how  many 
individuals  were  included  in  the  sample,  how  frequently  they  had  samples  taken, 
and  where  the  study  was  conducted--c 1  earl y ,  high  risk  areas  would  be  more 
likely  to  provide  useful  rnformation. 

Another  more  broadly  based  approach  depends  upon  a  better  understanding  of 
the  immune  deficiency  in  AIDS  through  basic  research.   This  would  also  help  in 
developing  a  suitable  blood  test. 

1  wish  I  could  be  more  specific  about  such  an  effort,  but  our  level  of 
understanding  of  AIDS  limits  our  ability  to  provide  a  definite  answer  at  this 
t  ime. 

Once  again,  I  am  most  appreciative  of  your  commitment  to  help  us  learn 
more  about  the  etiology  of  AIDS  and  its  treatment. 


Al'C- 


r/Jc^    -7:.c^  CU^-^^^ 


Sincerely   yours 


A. P.    B 


rowns tei n 

-    19  WEST  34th  STREET 


Cha I rman 


.  SUITE  1204  .  M^M:^  V«Hk  tof  2  f^J)'  hM^  '1 


ry    Counc  i I 


70 

Mrs.  Boxer.  Dr.  Compas,  I  was  rather  shocked  by  what  I  am  con- 
cluding as  a  result  of  your  testimony.  It  appears  to  me  that  the 
Haitian  community  was  branded  as  an  entire  community  before  it 
should  have  been,  and  that  because  we  used  sloppy  techniques  in 
interviewing  the  patients,  that  it  is  your  conclusion  that  the  Hai- 
tian people  who  have  AIDS  are  the  same  high-risk  population  as 
the  American  population,  if  you  will,  and  that,  at  this  point,  you 
say  in  your  testimony  on  page  5  that  you  have  received  no  official 
answer  from  CDC  on  discussing  this  problem. 

My  concern  is,  if,  in  fact,  it  turns  out  that  you  are  correct,  and 
they  were  wrong,  and  they  had  sloppy  information,  that  you  have  a 
stigma  on  your  community,  and  if  that  should  be  the  case,  do  you 
think  it  would  be  incumbent  upon  HHS  and  this  Government  to 
really  clear  the  name  of  the  Haitian  community  in  terms  of  its  not 
being  any  different  than  any  other  community?  And  should  that  be 
done,  if  this  proves  to  be  the  case,  with  a  massive  public  education 
effort? 

Dr.  Compas.  Yes;  definitely. 

We  did  not  receive  any  help  from  any  agency.  Federal  or  local, 
for  education  in  our  community. 

It  isn't  true  that  the  community  did  not  do  any  good  work,  and 
the  classification  was  totally  premature. 

Mrs.  Boxer.  I  understand,  but  would  it  be  your  desire,  should 
this  prove  true,  that  there  should  be  a  massive  public  information 
campaign  to  make  the  truth  known,  because  it  seems  to  me  from 
what  you  say  there  is  great  prejudice  against  children,  hiring 
people.  It  seems  that  we  have  caused  a  lot  of  pain  and  suffering  to 
an  entire  group  here. 

Dr.  Compas.  Yes,  because  all  Haitians  in  general  have  been  clas- 
sified as  a  high-risk  group,  and  people,  let's  say  professionals,  lay 
people,  people  working  as  maids,  or  whatever  type  of  work  they  are 
doing,  were  stigmatized  or  fired  from  their  jobs,  and  definitely,  if 
the  truth  comes  to  light,  the  American  Government  has  to  do  a 
great  deal  of  education  to  the  American  public  to  make  them 
known  what  is  the  truth  about  the  Haitian  community. 

Mrs.  Boxer.  In  other  words,  if  we  have  been  wrong,  we  better 
admit  our  mistake  because  an  entire  community  has  been  stigma- 
tized. 

I  want  to  move  on  to  Ms.  Apuzzo  here.  I  have  had  a  very  sirnilar 
experience,  as  you  have  had,  in  dealing  with  Dr.  Curran,  and  given 
the  fact  that  I  am  a  Member  of  Congress,  it  has  been  a  little  bit 
frustrating  for  me  in  trying  to  set  up  meetings  and  get  information 
and  data. 

Do  you  know  of  any  other  health  crisis  in  the  country  where  the 
Congress  has  had  to  really  push  the  health  officials?  In  other 
words,  it  seems  to  me  from  my  experience  as  an  elected  official, 
and  although  I  have  only  been  in  the  Congress  a  short  time— I 
have  been  in  local  government — that  it  is  the  health  people  that 
have  come  before  us  elected  officials  and  tried  to  really  fight  for 
funds,  money.  In  this  case,  I  see  a  very  reverse  type  of  situation, 
where  it  is  the  Members  of  Congress  that  are  really  pushing,  and  I 
wonder  that  in  your  research  you  might  want  to  comment  on 
whether  this  seems  to  be  a  different  kind  of  attack. 


71 

Ms.  Apuzzo.  It  certainly  has  raised  suspicions  in  our  minds,  Con- 
gresswoman  Boxer. 

We  only  have  to  look  at  an  instance  like  Legionnaires'  disease, 
where  I  don't  believe  the  public  health  officials  had  to  come  to  you 
to  say,  don't  push  us;  we  are  doing  a  great  job.  I  believe  they  were 
serious  and  directed,  and  very  above  board  in  pursuing  a  rapid  re- 
sponse, and  they  should  have  been. 

I  believe  that  we  make  a  terrible  error  when  we  pit  groups  in 
need  against  each  other. 

My  own  response,  and  Mr.  Endean  certainly  can  share  his,  is 
that  we  have  virtually  had  to  tug  every  inch  of  the  way,  and  I  ven- 
ture to  say  that  neglect  is  never  benign. 

If  I  have  suggested  that  the  neglect  has  been  malignant,  I  mean 
to  suggest  precisely  that.  I  believe  if  we  have  left  the  Haitian  com- 
munity, the  gay  community,  if  we  have  left  the  I.V.  drug  users 
standing  by  to  be  consistently  vulnerable  to  a  life-threatening  dis- 
ease, then  we  cannot  call  that  benign  neglect. 

Mr.  Endean.  Congresswoman,  we  faced  enormous  difficulties  in 
this  process.  On  the  one  hand,  the  administration  and  many  public 
persons  say,  don't  throw  money  at  a  problem. 

On  the  other  hand,  as  Ms.  Apuzzo  has  alluded  to,  we  have  had 
incredible  difficulty  in  finding  out  what  is  being  done,  and  what 
could  be  done  that  is  not  being  done. 

We  have  seen  a  consistent  pattern  here  that  leaves  us  at  a  very 
significant  disadvantage.  When  the  supplemental  appropriation 
was  being  marked  up  before  the  House  subcommittee,  the  adminis- 
tration made  clear  time  and  time  again  that  we  did  not  have  need 
for  AIDS  money,  and  at  the  very  same  time  as  that  was  being 
marked  up,  Dr.  Brandt  was  testifying  before  Congressman  Wax- 
man's  subcommittee,  and  on  significant  probing,  it  was  discovered 
that  they  were  not  sure  whether  they  did  or  did  not,  and  they 
might  have  to  ask  for  an  emergency  supplemental,  and  in  the  final 
situation,  $12  million  was  put  in  the  supplemental,  and  we  are 
very  pleased  with  that,  but  it  is  not  enough,  but  there  has  been  a 
consistent  pattern  here  that  leaves  many  of  us  that  are  attempting 
to  advocate  for  increased  funds  at  a  significant  disadvantage,  and 
you  are  quite  right:  For  a  public  health  emergency  of  this  sort,  I 
think  many  of  us  are  baffled  as  to  why  we  have  to  be  pushing  as 
hard  as  we  do. 

Mr.  Weiss.  Thank  you  very  much. 

Mr.  McCandless? 

Mr.  McCandless.  Before  I  ask  my  questions,  I  would  like  to  start 
by  saying  I  am  not  an  insensitive  person.  You  are  here  before  us, 
so  that  we  may  try  to  find  solutions  to  problems.  If  my  questions 
tend  to  take  on  some  kind  of  a  connotation,  it  is  not  intended. 

I  would  also  like  to  comment  that  this  is  a  number-one  public 
health  priority,  Ms.  Apuzzo,  and  I  certainly  don't  mean  to  place  it 
in  a  second-rate  position,  but  for  those  of  us  who  have  had  loved 
ones  die  of  cancer,  we  may  find  it  a  little  difficult  to  accept  this  as 
the  No.  1  priority  for  public  moneys. 

If  I  had  the  disease,  I  would  probably  think  entirely  different. 
The  area  that  I  have  some  problems  with  is  the  information  that 
the  staff  gave  to  me  as  a  beisis  for  participation. 


72 

It  indicates  that  there  are  certain  personal  habits  completely  sep- 
arate from  homosexuality  that  have  a  direct  bearing  upon  the  pos- 
sibility of  acquiring  the  disease. 

For  example,  a  report  indicates  that  90  percent  of  the  patients 
involved  have  used  nitrate  inhalers,  an  intravenous  drug.  I  would 
compare  this  to  a  person  having  a  problem  with  his  liver  and  being 
subjected  to  a  cirrhosis  type  of  indication,  and  continuing  to  drink 
alcohol.  Certainly  the  cirrhosis  of  the  liver  is  going  to  get  worse 
rather  than  moderate  itself. 

What  I  would  like  to  know,  Ms.  Apuzzo,  is  have  you  or  and  your 
organizations  produced  anything  in  the  way  of  a  self-awareness 
program  on  the  lifestyle  of  individuals  and  what  they  might  or 
might  not  do  in  order  to  prevent  the  disease? 

Ms.  Apuzzo.  Sir,  I  appreciate  your  refutatory  comment.  I  appre- 
ciate an  opportunity  to  address  the  question,  because  it  is  a  diffi- 
cult question,  and  difficult  questions  don't  have  simple  answers. 

I  would  say  to  you  parallel  to  your  question,  sir,  that  there  is  a 
high  correlation  between  smoking  and  lung  cancer,  and  yet  we  con- 
tinue to  pour,  appropriately,  money  into  the  cure  of  that  dread  dis- 
ease. There  is  a  correlation  between  other  behaviors  and  other  dis- 
eases, and  we  continue  to  seek  the  answers  to  those  diseases. 

More  specifically  to  your  point,  what  you  raised  is  a  question 
that  we  have  faced  every  day  since  we  have  had  to  deal  with  AIDS, 
and  the  question  basically  is  the  distinction  between  diagnosis  and 
judgment. 

Each  time  we  have  had  to  deal  with  the  issue  of  diagnosis,  there 
has  been  attendant  to  that  diagnosis  a  judgment. 

I  submit,  sir,  that  it  is  not  the  purpose  of  government  to  judge  in 
the  face  of  a  crisis.  It  is  the  purpose  of  government  to  solve  that 
crisis. 

But  let  me  go  one  step  further. 

You  could  raise  a  variety  of  specific  instances,  I  am  sure,  that 
would  not  be  easy  questions  to  answer,  but  I  would  beg  you,  to  take 
some  cognizance  of  what  is  the  oppression  of  a  gay  male  or  a  lesbi- 
an in  this  country.  Not  as  an  excuse,  but  symptomatic  of  that  op- 
pression, there  is  a  style  of  life  that  might  not  be  the  style  of  life,  if 
we  were  not  unable  to  share  domiciles  together  in  many  States. 
One  cannot  live  together.  There  is,  in  an  attempt  to  take  a  short- 
cut, there  is  a  series  of  circumstances  that  mitigate  against  gay 
people  simply  growing  up  and  living  their  lives  minding  their  own 
business. 

You  don't  need  me  to  tell  you  that.  I  would  submit  that  just 
anyone  from  this  community  coming  up  here  could  tell  you  that. 

In  terms  of  the  amyl  nitrates  and  butyl  nitrates,  those  questions 
should  be  addressed,  as  I  am  sure  they  are,  in  the  testimonies  that 
I  have  read  by  Dr.  Bruce  Voeller. 

Mr.  McCandless.  I  understand  that,  but  my  question  was, 
shouldn't  you,  as  executive  director  of  the  National  Gay  Task 
Force,  and  Mr.  Endean  of  the  Gay  Rights  National  Lobby,  and  as 
leaders  in  the  communities  you  represent,  make  certain  awareness 
programs  available. 

Ms.  Apuzzo.  Absolutely. 

Mr.  McCandless.  I  got  a  dialog  completely  separate  from  that.  It 
I  want  to  continue  to  drink  Scotch,  it  is  self-induced 


73 

Ms.  Apuzzo.  Let  me  assure  you,  sir,  that  the  hotUne  that  we 
have,  every  Hne  is  filled  and  has  to  be  filled,  every  person  request- 
ing information  gets  information,  and  we  alert  the  person  as  to  the 
risks  of  what  has  commonly  been  called  "fast  lane." 

We  have  invested  an  immense  sum  of  money  in  public  health 
education  literature  that  has  gone  out,  and  every  organization  in 
the  gay  community  that  has  been  involved  over  the  course  of  these 
last  2  or  3  years  has  produced  literature  advising  our  community 
about  what  constitutes  at-risk,  and  what  behaviors  put  persons  in 
the  category  of  at-risk,  and  have  urged  people  to  consider  very 
strongly  their  personal  lifestyles  and  the  necessity  to  address  those 
lifestyles  in  a  manner  that  will  bring  them  into  well  being  as  op- 
posed to  illness. 

Mr.  McCandless.  Thank  you,  Mr.  Chairman.  I  have  nothing  else. 

Mr.  Weiss.  Thank  you,  Mr.  McCandless. 

Mr.  Levin? 

Mr.  Levin.  Thank  you. 

Let  me,  if  I  might  converse  with  you,  Mr.  Brownstein,  because  I 
found  that  there  is  a  somewhat  different  experience  that  you  had 
in  your  organization,  in  dealing  with  the  Government,  than  was 
the  flavor  in  the  testimony  of  the  other  witnesses.  And  thank  you 
for  all  of  your  testimony. 

I  think  it  has  been  most  helpful. 

How  do  you  react — I  don't  want  to  put  you  too  much  on  the  spot, 
but  you  have  had  a  lot  of  experience  in  a  field  dealing  with  the 
Government,  and  a  lot  of  experience  obviously  in  the  public  health 
field  dealing  with  perhaps  one  sector,  but,  as  you  have  testified,  it 
relates  to  others. 

What  is  your  comment,  forgetting  about  motivation  for  a 
moment,  as  important  as  that  is,  what  reaction  do  you  have  to  the 
experience  in  this  battle  with  the  Federal  Government? 

Mr.  Endean  testified  about  the  slow  and  inefficient  response  of 
the  Federal  Government,  and  the  testimony  of  Ms.  Apuzzo,  that 
the  Government  responded  with  lack  of  speed,  especially  in  com- 
parison to  that  for  Legionnaire's  disease. 

Mr.  Brownstein.  I  have  two  responses  to  your  question,  which  I 
think  is  a  very  good  one.  First  of  all,  it  was  not  until  July  of  1982 
that  CDC  first  announced  three  cases  of  AIDS  among  hemophiliacs; 
that  is  quite  some  time  after  AIDS  had  been  identified  in  the  gay 
community;  so  I  think  that  in  relative  terms,  the  hemophiliac  com- 
munity were  newcomers  to  this. 

So,  in  a  way,  we  have  had  the  benefit  of  the  most  recent  increase 
in  public  awareness,  so  we  are  at  the  eclipse  of  the  awareness  that 
comes  from  the  Government,  from  the  Congress,  and  we  are  seeing 
increased  activity  going  on. 

Quite  frankly,  we  went  to  our  medical  community,  and  we  asked, 
what  needs  to  be  done,  not  just  for  this  hearing,  but  for  numerous 
meetings  that  we  have  had  over  the  past  year  due  to  this  crisis, 
and  we  have  identified  certain  areas,  and  we  have  reason  to  be- 
lieve, that  these  areas  are  being  addressed  and  the  timetables  for 
reviewing  research  grants  have  been  compressed  to  the  point  prac- 
tical. 

That  is  part  one. 


74 

Part  two  is  that  surely  everything  is  too  slow.  It  is  much  too  slow 
when  you  consider  that  1  out  of  every  500  severe  hemophiliacs  has 
contracted  the  AIDS  problem  to  this  very  date.  We  want  a  cure  to- 
morrow. 

Daily,  myself,  and  chapters,  and  our  medical  people  throughout 
the  country,  are  in  daily  contact  with  hemophiliacs,  mothers  who 
call  up  and  say,  I  infused  my  child  last  night,  and  I  am  afraid  that 
that  infusion  had  AIDS  in  it,  but  we  know  that  that  is  not  possible 
to  determine,  knowing  the  incubation  period,  but  these  are  very 
real  fears,  so  it  is  too  slow!  Yes,  it  is,  and  our  frustration  calls  out 
for  a  cure. 

I  cannot  comment  to  your  question  as  it  relates  to  the  Govern- 
ment's response  2-3  years  ago,  when  it  became  apparent  that  this 
was  a  major  problem,  but,  as  we  are  seeing  it  now,  we  see  the  ad- 
ministration and  Congress,  we  see  all  this  activity,  and  all  of  this 
contributes  to  increased  awareness  and  support,  so  the  slowness 
will  become,  hopefully,  more  rapid.  That  is  my  response. 

Mr.  Levin.  Let  me  ask  Ms.  Apuzzo  or  Mr.  Endean,  have  either  of 
your  organizations  tried  to  put  together  what  a  more  comprehen- 
sive plan  might  look  like? 

I  know  it  is  very  difficult  for  you  to  do  that,  but  the  prime  focus 
of  these  hearings  will  be  on  that  question,  or  it  is  at  least  one  of 
the  major  areas  of  attention,  with  the  human  tragedies  beyond  de- 
scription, and — I  hope — I  think  all  of  us  are  deeply  troubled  by  it. 

We  also  want  to  try  to  embody  that  in  some  kind  of  response 
here  that  makes  sense. 

Do  you  have  any  guidelines  for  us  that  you  would  like  to  throw 
out  at  this  point?  Perhaps  it  would  only  provide  some  useful  mate- 
rial for  us  to  consider  before  we  talk  with  the  Government  wit- 
nesses. 

Mr.  Endean.  The  Gay  Rights  National  Lobby  has  lobbied  Con- 
gress for  a  number  of  years  now.  A  primary  focus  until  recently 
has  been  on  securing  civil  rights  and  equal  justice  for  gays  and  les- 
bians. 

Our  focus  has  changed  dramatically  to  look  at  the  AIDS  issue. 
However,  we  are  a  small  organization,  and  we  face,  as  I  suspect  the 
task  force  and  other  organizations  face,  enormous  difficulty  in  get- 
ting the  facts  about  what  is  and  is  not  being  spent,  what  is  and  is 
not  needed. 

So  I  have  some  difficulties,  frankly,  giving  you  the  guidance  as  to 
all  of  the  details  of  what  should  be  done  that  is  not  being  done. 

It  seems  to  me  that  administration  and  public  health  officials 
who  know  from  the  various  institute  heads,  for  instance,  what  they 
believe  would  be  needed,  have,  when  they  come  up  to  Capitol  Hill, 
been  gagged.  0MB  does  not  let  them  spell  out  what  is  and  what  is 
not  needed  except  within  the  confines  of  the  budget  that  they 
choose  to  dictate,  so  I  am  at  somewhat  of  a  loss  to  really  give  you 
the  guidance  that  I  think  you  need. 

It  is  my  hope  that  these  hearings  will  play  a  major  role  in  get- 
ting a  clear  handle  on  what  is  needed.  Clearly,  we  have  not  even 
scratched  the  surface  at  the  present. 

Ms.  Apuzzo.  If  I  may  just  add  to  that,  sir,  and  I  know  Dr.  Voeller 
and  Dr.  Conant  will  be  much  more  specific  in  their  recommenda- 
tions to  you  as  a  result  of  their  expertise,  but  I  would  say  from  one 


75 

lay  person  to  another,  where  this  is  concerned,  we  need  animal 
models  and  we  need  them  rapidly.  They  are  very  expensive.  We 
probably  ought  to  look  at  each  and  every  body  fluid,  and  probably 
over  a  2-year  period  of  time,  because  that  is  what  is  being  hypoth- 
esized as  the  incubation  period.  I  don't  know  what  the  parameters 
are  in  terms  of  the  number  of  animals,  but  I  have  seen  models  that 
suggest  over  a  2-year  period  of  time  in  each  of  the  six  body  fluids 
that  one  could  spend  $193  million.  That  does  not  take  into  consider- 
ation a  beefed-up  epidemiological  program  that  really  takes  confi- 
dentiality seriously  and  provides  data  we  can  have  confidence  in. 
That  does  not  take  into  consideration  public  health  information, 
which  has  to  educate  fast,  and  that  does  not  take  into  consideration 
a  real  partnership  with  the  affected  groups,  so  we  can,  in  fact, 
work  together  to  get  to  the  bottom  of  this,  and  it  does  not  take  into 
consideration  patient  care.  I  am  sure  I  have  left  some  things  out, 
but  I  think,  if  we  continue  to  think  in  terms  of  $10  million,  $25 
million,  and  think  that  those  sums  seem  very  large,  that  they  will 
solve  the  problem,  then  I  think  we  are  foot  dragging. 

It  appears  to  me,  and  I  said  before  Mr.  Natcher's  committee 
sometime  ago,  that  we  have  a  National  Academy  of  Science  and 
the  best  minds  available,  if  CDC  and  NIH  cannot  come  up  with  a 
program  that  says,  this  is  what  is  needed  over  this  much  period  of 
time,  and  this  is  what  it  will  cost.  Again,  to  gain  our  confidence  in 
that  program,  perhaps  it  is  time  to  go  to  another  body  that  I  under- 
stand was  put  into  effect  to  apprise  Congress  of  scientific  issues 
when  they  needed  to  call  upon  it. 

Perhaps  it  is  time  that  we  look  to  another  group  of  experts  to 
assist  us  in  putting  together  something  that  frankly  all  of  us  can 
have  some  confidence  in. 

Mr.  Weiss.  Thank  you. 

Mr.  Craig? 

Mr.  Craig.  Thank  you  very  much,  Mr.  Chairman,  and  special 
thanks  to  all  of  the  panelists. 

I  am  at  a  point  of  being  confused  as  to  what  questions  to  ask, 
because  I  see  a  variety  of  accusations  and  immediate  contradictions 
flying  in  the  whole  testimony  of  the  panel.  Let  me  address,  first  of 
all,  the  issue  of  discrimination. 

My  reaction  to  that  issue  as  it  relates  to  the  testimony  I  have 
heard  this  morning  is,  if  you  were  here  testifying  on  the  issue  of 
cancer,  as  we  now  know  it  today,  the  issue  of  discrimination  would 
never  arise,  because  it  is  a  nondiscriminatory  disease. 

It  appears  from  the  evidence  that  is  available  today  on  AIDS, 
that  it  is  apparently  discriminatory  to  a  point.  If  you  are  to  talk  of 
the  disease  based  on  the  information  that  is  available  today,  then 
by  the  knowledge  of  that  information,  you  have  to  speak  about  cer- 
tain groups  of  people  and  certain  communities  or  lifestyles,  and  in 
so  speaking  of  the  disease,  the  accusation  can  be  made  that  in 
speaking  of  it,  you  are  discriminatory. 

I  question,  then,  the  accusation  that  is  made,  based  on  that  kind 
of  logic  which  I  don't  find  too  faulty,  as  it  relates  to  blood,  and  a 
person  who  is  on  the  threshold  of  studying  this  problem  recogniz- 
ing that  it  is  blood  related.  Then  if  we  are  to  speak  of  blood,  and 
you  have  to  in  the  confines  of  this  disease,  and  you  speak  of  com- 
munities with  which  the  disease  seems  to  be  prevalent,  you,  by 


76 

that  relationship,  develop  a  problem.  I  remember  Government  re- 
search officials  in  the  early  stages  of  other  areas  of  research 
making  statements  that  were  later  found  to  be  totally  faulty.  But, 
based  on  the  early  information,  they  thought  they  were  being  re- 
sponsible in  making  those  statements. 

If  I  could  be  so  crass  as  to  say  cyclomates  are  carcinogenic — now 
it  is  questionable  whether  they  are  at  all,  but  we  went  through 
that  era,  and  we  have  that  problem.  I  think  that  Mr.  Brownstein 
mentioned  today  in  his  testimony  the  tremendous  complication  in- 
volved in  the  intricacy  of  what  we  believe  to  be  involved  with  this 
disease. 

You  would  not  be  here  today,  Ms.  Apuzzo,  if  it  were  not  for  all 
that  has  transpired  since  1981. 

You  would  not  have  been  here  in  1981,  because  this  hearing 
would  never  have  been  called.  We  simply  did  not  have  even  the 
preliminary  research  we  have  today  which  is  beginning  to  identify 
the  extensiveness  of  the  problem.  So  I  look  at  the  record,  and  I  am 
not  saying  you  should  not  be  a  prophet  of  action,  and  hopefully  this 
committee  can  respond  in  a  reasonable  sense  as  it  relates  to  dollars 
and  a  course  of  direction  in  assisting  with  CDC  and  NIH,  but  from 
1982  to  1984  this  Government  has  spent  $37  million,  excluding  the 
supplemental  twelve.  Look  at  legionnaires:  we  spent  $18.5,  and  yet 
you  say,  that  was  an  immediate  call  to  action,  and  the  timeframe 
was  1976  to  1984  for  the  expenditure  of  those  dollars. 

I  will  agree  that  when  you  look  at  the  report,  there  were  2,700  in 
that  timeframe  that  were  identified  as  having  contracted  legion- 
naires with  an  18-percent  death  rate  in  a  much  shorter  timeframe, 
but  only  because  the  research  has  gone  on  and  the  collection  data 
has  been  brought  about. 

We  are  now  able  to  determine  some  2,000-plus  cases,  with  nearly 
a  death  rate  of  38  percent. 

If  you  look  at  toxic  shock  syndrome,  $8.2  million  to  date  was 
spent  by  the  Federal  Government. 

We  have  now  appropriated  and/or  spent  over  $40  million  to  date, 
and  obviously  a  great  deal  more  will  now  be  spent  or  else  the  Sec- 
retary of  HHS  would  not  have  called  it  the  No.  1  medical  problem 
in  this  country  today. 

Based  on  the  research  I  have  read,  I  think  we  are  beginning  to 
respond  with  a  great  deal  more  urgency,  and  they  will  respond 
with  a  great  deal  more  urgency  since  it  is  now  recognized  to  be  a 
specific  emergency. 

I  believe  that  if  you  would  look  at  the  past,  the  present,  and 
what  we  perceive  we  must  now  do  in  the  future,  that  I  could  find 
selected  areas  of  criticism.  However,  the  record  bears  rather  clear- 
ly that  this  Government,  based  on  its  knowledge,  this  administra- 
tion, on  history  and  the  record,  is  beginning  to  respond  faster  than 
they  have  ever  responded  to  anything  else.  It  is  beginning  to  re- 
spond in  an  appropriate  fashion,  and  it  will  be  this  committee  and 
your  assistance  that  will  bring  that  kind  of  response  at  a  much 
more  rapid  rate  than  we  have  seen  in  the  past. 

Mr.  Weiss.  Although  your  time  has  expired,  I  think  it  is  only  fair 
to  allow  the  panel  to  respond  hopefully  ever  so  briefly. 

Mr.  Craig.  Thank  you,  Mr.  Chairman. 


77 

Mr.  Endean.  Congressman,  I  am  glad  you  raised  the  issue,  be- 
cause since  Secretary  Heckler  proclaimed  AIDS  the  No.  1  priority, 
the  administration  has  not  modified  its  initial  1984  budget  propos- 
als. Those  are  woefully  inadequate.  The  administration  proposals 
for  fiscal  year  1984  are  less  than  already  has  been  spent.  With  all 
due  respect,  I  think  we  are  seeing  a  rapid  speedup  in  rhetoric. 

I  grant  that.  I  think  that  the  administration  has  spoken  out 
forcefully.  It  has  not  spoken  out  forcefully  to  its  budget  offices,  to 
the  appropriations  committees,  subcommittees,  or  to  the  Congress. 

Without  that  kind  of  action,  it  remains,  in  my  view,  so  many 
words. 

Ms.  Apuzzo.  I  think  it  is  difficult  to  acknowledge  perhaps,  from 
your  perspective,  that  the  Government  could,  in  fact,  be  discrimi- 
nating against  any  group  of  people  in  this  country.  From  my  per- 
spective, it  has  been  a  part  of  my  life.  From  the  perspective  of 
those  who  are  persons  with  AIDS,  ask  them. 

When  you  say  that  the  administration  is  now  speeding  up,  I  can 
respond  to  that;  I  can  have  hope  in  that,  and  I  can  be  willing  to 
continue  to  work  and  encourage  my  community  to  continue  to 
work,  but  I  have  to  say  to  you,  sir,  we  now  have  upward  of  1,902 
cases  in  this  country  as  of  a  couple  of  days  ago.  That  is  a  long  time 
waiting,  and  it  is  very,  very  costly  waiting,  sir. 

Thank  you. 

Mr.  Craig.  Thank  you,  Mr.  Chairman.  Recognizing  the  time 
limit,  let  me  conclude  on  the  discrimination  issue  that  Ms.  Apuzzo 
talked  to 

Mr.  Weiss.  You  have  taken  twice  your  allotted  time. 

Mr.  Craig.  I  appreciate  that,  Mr.  Chairman — and  I  will  make  it 
very  brief — I  don't  think  anyone  in  this  Government  chooses  to  dis- 
criminate. 

There  may  be  exceptions,  but  I  do  recognize  that  whon  you  single 
out  a  problem  that  may  address  a  select  group  of  people,  depending 
on  your  sensitivity  to  the  problem  and  the  group,  that  can  be,  and 
oftentimes  is,  construed  as  being  discriminatory. 

Mr.  Weiss.  If  members  have  other  questions,  of  course,  we  will 
provide  the  time  for  addressing  them  to  the  panel. 

If  not,  however,  we  do  have  a  group  of  medical  people,  doctors 
and  researchers,  who  will  comprise  the  next  panel. 

I  would  like  to  move  on  to  them. 

Mr.  Walker? 

Mr.  Walker.  On  page  3  of  your  prepared  testimony,  you  suggest 
that  other  high-risk  groups  have  used  the  Haitians  as  scapegoats, 
Dr.  Compas. 

Would  you  elaborate  on  that  comment  a  little  bit  for  me,  please? 

Dr.  Compas.  A  few  gay  people  have  been  trying,  in  some  newspa- 
per articles,  I  don't  remember  which  one  exactly — to  relate  the  dis- 
ease to  the  swine  fever  virus  and  has  been  saying  that  we,  Hai- 
tians, are  bringing  the  diseases  here.  Some  gay  community  leaders 
have  rejected  those  accusations  and  defended  the  Haitians. 

Mr.  Walker.  OK.  Could  you  provide  for  the  record  some  of  the 
documentation  that  you  have. 

Dr.  Compas.  Yes. 

[The  articles  referred  to  follow:] 


26-097    O— 83 6 


78 


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ii'-  Mu  .ik'il  111  I  ekriijr\  U)8'  She 
■!i..     iK.i    lived   111   Newjrk,  New   Jersey. 

'•..,,  M.i'.  h  'o  Sepieinher  1 ')S0.  during 
ulikli  nine  >lie  h.ul  sexii.il  rel.ilioiis  willi 
.iiioiliei  ll.iili.iii  (ni.ile)  Her  \iiKTk;ii' 
M'Mi.il    p.iiiuei   died  ol    AIDS  iii   .lanii.ii\ 

I  OS-. 

Ill-I     ^^-W.ll    I'ld    llll-.ll.llld    lk-\OI    MMIed 

;|u  I  S  III  .iiii\id  111  I'.i'is  111  Oiliiisei 
I'l.M  iikl  \'..is  llisi  .idiiiilled  k'  .1  hospilil 
.ju'c  111  (ki.il'ci  I'l^l  lie  died  kuii 
11. mills  l.iki  /This  K-pnii  seeing  k'  i:i\e 
luiie  weiehl  IoTTk  uoiioii  ihai  MPS  has 
i..;in.iled  111  Main,  .ind  his  keen  spie.id 
ihe  I  .S   ,iiid  1  iirope  lioiii  llieie 


Gay  Men  and  Anorectal  Cancer 

In  .,  icik-i  k'  ihe  Ji'iinhjl  <'l  nw  \iiici 
II  .III  W((//c,/i'  IW'lltinnll  (\1,i\  i  i  p.i^^ 
:4siM    Bilk.    \  ihIKm     I'll  |)     Lik'     iiiedi 


anal  inleuniiise  OMier  siiidies  sliouM  in 
elude  i;a\  men  who  .k  i  e\elusivel\  .is  anal 
penelraiors  ,iiid  i;.i\  men  who  act  e\elii- 
sivelv  as  anal  reeipienls  who  uv  oil  liihri 
...mis.  and  leupieiils  who  use  w.ilersohi 
hie .  non-oil  luhiieanls 


Interferon  Therapy  for  KS 

Inierleron  i>  a  small  protein  produced 
In  a  livini:  cell  in  response  lo  inlectioii  In 
.1  virus  Interleron  in.i\  ;jo  on  k>  cause 
lesisi.iiKe  ki  -inolliei  iiilei.lion  In  ihe  vi 
Ills  111  even  inleiliou  b\  .idilleieni  vniis 
Inlerlerons  either  ii.iliiialK  loinied  oi 
pkkhked  in  l.il'or.ikincs  ha\o  lieensliowi! 
lo  l-e  oi^.isloii.ilK  ^.ip.ikh  'I  I'diihllliiL 
ihe  .jioulh  ol  ^eriain  kinds  .u  iiiiiii'is  h' 
k'lleion  ill. IN  .liso  iliodlU  the  ^.mise  ii 
Mill  luUk  noils  111  Ir.iinans  ii.  Iiidnie  hep 
.ilills  H  .ind  .  \  loiiKu.ilii'  II  IIS  1 1  \1\  link 

ll.ii'  l';-is|,Ii   III      I     \t\       111  I.-..  Ii      1!  ■      111      '.;.l\ 

I'len    ':.i\.-    beep    .oiisnlrie.l     is    i    |i.iss|li|,- 
.iiuc    .'I     \  1 1  )S     in  !  Ii.iv.    keen  .is«.  h  i.i  i.  .1 
»,lli  kS  .IS  ,vc|l 

I  he    .  I  kkis    ..I   a  p.i;  IK  mI  11    km. I  -.1    ii. 
.iieior     .Ml    li.ini.'-es  n.ii     in-'U     uilli     K's 
■ .  11      jMeseiik-d.     in     lli  ■     '    '(/■■.-.;•       •     •'.-. 
I  "I,  -.1,  ,r      !/../(,  ,;/      li\.'.  ..;./.■■      I  \l  r.     c. 
pj.^c    lll~l|  k\    Su-.iii    1      kiii\\ii    ind  lu  I 
Liilli   icues     0:     ki.nui  .idiinillsli.ied  liliei 
kii'ii    In    I  ■     MI'S   p.iiienis  \\h,i  h.id  k.S 
live    denioiisi  laied    .i   niajoi    pnsiiue    k 
spouse    .ind  iliree  h.id  .i  iiiiii"!  tempoiaoi 
lesponse     1  liese   data   siigjicst    ili.it   inlei 
leron  may  prove  uselul  in  treating  KS  in 
AIDS   viclnns.   and    also   thai    interferon 
may  restore  at  least  some  aspects  ol  cell- 
mediated     (Tcell)     immune     tiincltons 
Some   chcinotherapcuiic   agents  used  to 
treat  KS  have  an  iinmunosiipprcssive  et- 
tect     Interreron    ma\    he  particularly   ad- 
vantageous  because   it   does  not   produce 
these    untoward    immuiiosuppiessive    el 
lecls    a    factor    ot    great    importance    in 
treating  AIDS  vicliiTis 


Wear  Condoms- 
Reduce  Your  Risk  of 
Contracting  AIDS 


Rescikli  |i.ipersaiid  comnienisappeai 
inj;  111  ihe  mediial  liieiaiure  implv  ihai 
ur.inikj  .  ondoiils  ki  puv.iil  seiiun  lioiii 
enkiine  one  s  pailnei  s  k...h  ni.r,  have  .i 
role  in  pieveniinj;  \1DS  .Se\ii.il  prac  ikes 
bv  which  semen  is  received  or  illv  oi  .inal- 
l\  h.ive.ol  couise.  cominoiiK  oicuiied 
ihioiiulioiil  ilk  hislorv  .11  huin.in  sexu.il 
iiv  l-i>r  ihe  piiscnk  li.iwever.  the  risk  ol 
..;ettiiis:  AIDS  rec|Uires  certain  precaunons 
III  si-\u.il  pi.Kiices  ih.il  involve  exposure 
I,,  scinen.  uiiiii-  k  •  es.  .iiid  blond.  Il  iheie 
IS  .1  ,  aiisaliM-  .kJeiil  vd   AIDS,  like  a  viius. 


79 


ABC  NEWS  20/20 

May  19,  1983 

HUGH  DOWNS:  Ciood  evening.  I'm  Hugh  Downs.  And  this  is  20/20. 
ANNOUNCER:  On  the  ABC  Newsmagazine.  20/20.  tonight: 
AIDS  —  an  incurable  disease. 

Dr.  MARCUS  CONANT:  I  think  it's  naive  to  believe  that  the  AIDS  epidemic  is  going  to 

remain  confined  to  one  small  segment  of  the  population.  I  think  this  is  a  problem  for  the 

entire  American  public. 
ANNOUNCER:  The  most  frightening  epidemic  since  polio:  80  percent  of  its  victims  die. 
and  reported  cases  arc  doubling  every  six  months.  Firet  identified  in  the  the  homosexual 
community,  now  it's  in  35  states,  and  the  nation's  blood  supply  may  be  threatened.  Did 
moralistic  attitudes  delay  the  medical  counterattack?  Did  prejudice  give  AIDS  a  fatal  head 
start*^  Geraldo  Rivera,  with.a  report  on  the  mysterious  killer  called  "AIDS" 
Bene  Midler  —  what  drove  her  tc  the  top? 

AARON  RUSSO:  She  thought  for  about  three  seconds,  four  seconds,  and  said.  "I  want 

to  be  a  legend. "  And  when  she  said  that  to  me.  it  made  everything  very  clear.  You  know. 

I  knew  exactly  what  my  job  was. 
ANNOUNCER:  His  job  was  to  make  her  a  national  star.  Bette  Midler  —  abrasive,  provoca- 
tive, often  outrageous  on  stage,  ofhtage  she's  been  called  a  shy  and  private  person. 

BETTE  MIDLER:  I  should  have  been  something  just  a  little  more  conventional,  like  a 

teacher  or  a —  and  I  would  have  been  a  wonderful  teacher. 
ANNOUNCER:  Steve  Fox.  with  the  stoiy  of  the  Divine  Miss  M  —  'Bene  Midler." 

LESLIE  GEIQER:  When  I  would  k)ok  in  the  minor  when  I  had  a  pair  of  shorts  on.  I 

would  cringe.  My  whole  body  image  was  tied  up  in  my  thighs. 
ANNOUNCER:  Cellulite  —  the  warm  weather  embarrassment  Women  work  to  tose  it.  and 
they  spend  millions  of  dollars  to  do  it.  They're  slapped,  steamed,  wrapped  and  bagged  —  but 
does  it  do  them  any  good?  John  Stossel  reports  on  the  treatments  of  "Cellulite:  Fad.  Fact  or 
Fantasy?" 

DOWNS:  Up  front  tonight,  A-I-D-S.  AIDS,  tfje  most  frightening  initials  in  America  today. 
They  stand  for  Acquired  Immune  Deficiency  Syndrome,  a  medical  mystery  thai  destroys  the 
immune  system,  and  leaves  our  bodies  defenseless  against  unusual  and  deadly  infections. 
And  yet,  wide  publicity  and  public  funding  for  an  attack  on  this  dangerous  disease  have  only 
recently  begun.  Why  the  delay?  Here  is  Geraldo  Rivera.  GeraWo? 
GERALDO  RIVERA:  Why  ttie  delay  especially,  Hugh,  when  you  consider  the  fact  that 
AIDS  has  already  killed  more  people  than  the  Legionnaire's  Disease  outbreak  and  the  toxic 
shock  syndrome  combined.  It  is  the  most  frightening  medical  mystery  of  our  times.  AIDS 
has  spread  worldwide,  but  apparently  it  began  in  equatorial  Africa  and  somehow  spread  to 
Haiti,  and  from  Haiti  to  theUnited  States.  Why?  Nobody  knows:  specialists  at  the  Centers  for 
Disease  CorttWi.  Ihe  tUCTFrnik  AIDS  may  be  caused  by  some  new  virus,  but  so  far  they 
have  had  absolutely  no  success  in  tracking  it  down,  even  though  AIDS  has  been  killing 
people  in  this  country  since  1979. 
[clip  of  memorial  march  for  AIDS  victims} 

MAN:  Fighting  for  our  lives . .  .too  little  is  being  done  too  late . . . 
RIVERA  [voice-over]:  There  is  an  epidemic  kxKC  in  the  land.  This  memorial  march  is  in 
honor  of  the  past  and  future  victims  of  AIDS,  a  so  far  incurable  disease  which  kills  its  victims 
in  stages. 

BILL  BURKE,  AIDS  patient:  I'm  tired  of  k>sing  people  that  I  k)ve  and  I  care  about. 
RIVERA  [voice-over}:  The  doctors  believe  that  Bill  Burke  and  these  other  men  have  it. 

—  2  — 


80 


[interviewing}  Every  day  you  hear  abou(  more  people. 

Mr.  BURKE:  Yeah,  a  friend  of  mine's  going  for  biopsies  today.  Another  friend  of  mine  died 

two  weeks  ago.  And  every  week,  somebody  else  comes  down  with  it,  or  somebody  I  know 

goes  into  the  hospital  who  had  been  doing  well.  And  it's  heartbreaking.  It's  heartbreaking. 

RiVERA  [voice-ever]:  Heartbreaking  and  terrifying.  Bill  and  these  other  men  seem  to  be 

doing  pretty  well,  but  alt  of  them  know  that  80  percent  of  all  AIDS  victims  are  dead  within 

just  two  years.  This  is  easily  the  worst  epidemic  since  polk).  The  story  of  the  birth  and 

malignant  spread  of  the  killer  disease  may  seem  like  a  scenario  from  some  honor  movie,  but 

this  is  real  life. 

KEN  RAMSAUR,  AIDS  patient:  Before  I  got  Kaposi's.  I  thought  I  was  a  pretty  goodkwk- 

ing  guy  —  average,  but  happy  —  and  now  it's —  I  actually  see  myself  fading  away. 

RIVERA  [voice-over]'.  Twenty-seven-year<jW  Ken  Ramsaur's  case  is,  unfortunately,  typi- 
cal. Diagnosed  just  last  summer,  AIDS  has  already  stripped  his  body  of  its  ability  to  fight  off 
other  diseases  and  infections.  Left  unprotected,  he's  contracted  Kaposi's  sarcoma,  up  to  now 
a  rare  form  of  cancer. 

Mr.  RAMSAUR:  Everything  that  1  used  to  be  able  to  do  by  myself,  I  now  need  tots  of  help 
with,  ar»d  it's  just  scaiy  —  it's  scary  the  way  I'm  not  what  I  was. 

RIVERA  [voice-over];  And  Ken  is  not  dx  only  one  who  is  scared  —  but  let's  trace  this  killer 
disease  back  to  its  beginnings. 

MAN:  Free  AIDS  litetanire  —  please,  learn  about  the  symptoms. 

RIVERA  [voice-over]'.  In  1979.  this  is  where  tf»e  first  cases  came  to  light,  in  New  York's 
Greenwich  Village  and  within  male  homosexual  conununilies  in  San  Francisco  and  Los 
Angeles. 

BOB  CECCHI,  AIDS  patisnt:  I  was  going  out  and  meeting  people,  and  trying  to  find  a 
tover,  and  making  tove  to  people  who  interested  me.  I  didn't  kr»w  that,  you  know,  that  there 
were  things  out  there  so  secretly  hidden  that  it  was  going  to  destroy  my  life. 
RIVERA  [voice-over]:  Because  it  was  first  thought  limited  to  this  one  group,  it  was  known 
then  as  "the  gay  cancer,"  and  later,  "the  gay  plague."  However,  those  derogatory  labels 
soon  become  obsolete. 

Or.  MARCUS  CONANT,  Univwslty  of  Caiifomia  at  San  Prandaco  Medical 
Center:  J  think  it's  naive  to  believe  that  the  AIDS  epidemic  is  going  to  remain  confined  to 
one  small  segment  of  the  population.  I  think  this  is  a  problem  for  the  entire  American  publk. 

RIVERA  [voice-over]:  When  the  disease  was  identified  in  mainlining  drug  users,  the  re- 
searchers were  fairly  convinced  that  it  was  like  hepatitis  —  either  sexually  transmitted  or 
bkxxi-bome.  But  then,  in  the  fall  of  1981 ,  the  mystery  became  even  more  ominous,  when  the 
disease  was  also  diagnosed  in  otherwise  healthy  immigrants  from  Haiti,  men  who  were 
neither  homosexual  nor  drug  users.  Then  it  spread  to  the  women  who  were  the  sexual 
partners  of  those  at  risk. 

Dr.  CONANT:  If  research  firnds  are  not  brought  to  bear  on  this  problem  quickly,  the 
problem  is  going  to  spread  throughout  the  entire  country  and  be  a  major  health  problem  for 
us. 

RIVERA  [voice-over]:  Like  ink  spreading  on  a  bkxter.  AIDS  continues  to  claim  different 
types  of  victims.  As  an  example,  eight  infants  bom  of  high-risk  parents  seem  to  have 
contracted  die  disease.  Four  have  died.  And  just  last  summer.  AIDS  began  turning  up  in 
hemophiliacs,  and  other  people  who  had  leceived  transfusions  of  btood.  Some  estimate  there 
will  be  20,000  AIDS  cases  repotted  by  the  end  of  next  year,  [on  camera]  And  so  the  evil 
genie  is  out  of  the  bottle.  With  repotted  ca.ses  doubling  every  six  months,  AIDS  has  now 
been  identified  in  over  35  sutes  arid  16  foreign  countries.  Of  course,  the  counterattack  has 
also  begun.  Scores  of  medkal  researchers  and  scientists  are  shidying  die  problem.  The 
epidemic  has  also  received  a  great  deal  of  recent  attention  in  the  news  media,  but  one  charge 
we  hear  really  raises  a  question  for  all  of  us;  whether  our  prevailing  social  and  political 

—  3  — 


81 


attitudes  —  put  more  bluntly,  whether  our  negative  attitudes  about  homosexuals  —  allowed 
this  killer  epidemic  a  bizarre  and  deadly  head  start. 

LARRY  KRAMER,  Gay  Mten'S  Health  Crisis:  We're  into  this  two  yean,  and  you  are 
finally  doing  a  story  —  Time  and  Newsweek  are  finally  doing  a  story.  There  are  a  thousand — 
1,600  cases,  there  are  800  dead  people.  How  many  does  it  take  before  somebody  pays 
attention  to  it? 

RIVERA  (voice-overj:  Larry  Kramer,  a  co-founder  of  the  Gay  Men's  Health  Crisis,  is 
especially  critical  of  the  newspaper  of  record,  the  New  York  Times. 

Mr.  KRAMER  [on  telephone}:  The  New  York  Times  is  being  socially  irresponsible  by  not 
relaying  to  one  million  members  of  its  community  what  is  affecting  them. 

RIVERA  [voice-overl:  Although  New  York  has  about  half  the  reported  cases  in  the  nation, 
with  about  250  dead  so  far,  Kramer  points  out  that  in  its  coverage  the  Times  has  never  put  the 
AIDS  story  on  its  finont  page.  Contrast  that  with  the  front-page  prominence  given  a  recent 
herpes  outbreak  that  killed  30  dancing  horses  in  Austria.  The  management  of  the  New  York 
Times,  on  the  other  hand,  told  us  they  feel  they  have  adequately  coveted  the  story,  in  any 
case,  now  tjiat  AIDS  poses  a  threat  to  the  nation's  bkxxl  supply,  society  and  the  media  are 
finally  paying  attention. 

rtop.  HENRY  WAXMAN,  (D)  CalKomia:  Public  officials  are  very  influenced  by  public 
opinion,  and  public  opinion  is  very  much  influenced  by  what  the  media  does. 

RIVERA  {voice-overj:  Henry  Waxman  has  also  been  critical  of  the  govenunent's  handling 
of  the  epidemic.  He  should  kiiow;  he's  chairman  of  the  House  Subconunittee  on  Health  and 
the  Environment. 

Rap.  WAXMAN:  We  saw  when  Legionnaire's  Disease  came  into  the  public  awareness  that 
there  was  immediate  clamor  for  action.  Had  this  disease  aftlicted  children  or  members  of  the 
Chamber  of  Commerce,  I'm  sure  the  Reagan  administration  woukl  have  been  breaking  down 
all  doors  in  order  to  push  the  govenunent  on  all  fronts  to  deal  with  it. 

RIVERA:  Has  it  been  bigotry,  bureaucracy  or  budget  cuts  tfiat  have  skewed  the  response  to 
this  terrible  problem? 

Rap.  WAXMAN:  I  think  all  three  of  those  factors  have  meant  that  the  f^vemment  dkl  not 
respond  as  we  should  have  to  this  public  health  crisis. 

Rap.  WAXMAN  (lo  House  Subcommittee  on  Health  and  Environment.  May  9.  19831: 
CDC  first  identifi»J  the  disorder  in  June  of  1981 .  According  to  your  testimony,  6te  first 
NIH  grants  were  made  IS  months  later,  and  then  for  only  SI 65 .000. 

RIVERA  [voice-overj:  Bothered  by  the  apparently  sk)w  initial  response  to  the  AIDS  epidem- 
ic, both  Waxman  of  California  aixl  Senator  Moynihan  of  New  York  have  introduced  legisla- 
tion requesting  $40  million  a  year  for  public  health  einergencies  like  AIDS.  But  Dr.  Edward 
Brandt,  the  assistant  secretary  of  Health,  is  opposed. 

Dr.  EDWARD  BRANDT,  assistant  sacratary  of  Hatfth:  I  oppose  those  measures 
t)ecause  tttey're  not  needed. 

RIVERA  [voice-overj:  And  Dr.  Brandt  is  the  Reagan  administratkNi  official  to  whom  all 
public  health  agencies  report,  [to  Dr.  Brandtj  It's  given  the  fact  that  the  disease  is  so 
complex  and  the  ramifications  so  awfiil,  tfie  mortality  rate  so  high,  6aA  critics  say  the  federal 
govenunent  should  have  done  more  sooner,  nxwe  money,  more  people,  nwre  research  — 
isn't  this  ihe  prototypicai  case  where  emei^gency  funding  and  emergency  measures  should 
have  been  taken  by  the  federal  government? 

Dr.  BRANDT:  The  issue  is.  what  wouM  you  have  done  different? 

RIVERA  [voice-overj:  What  might  fiave  tieen  done  differently?  Example:  with  more  federal 
money,  researchers  and  scientists  at  tfie  Centers  for  Disease  Control,  the  CDC.  might  have 
,been  able  to  keep  a  closer  watch  on  the  spread  of  this  killer  disease. 
Mr.  KRAMER:  The  gay  community  has  been  trying  for  nine  months  lo  get  the  CDC  to 

—  4  — 


82 


reinstihite  active,  serious,  in-depth  surveillance,  interviewing  the  victims  to  see  who  they  had 
slept  with,  what  they  had  done  —  figuring  out  the  patterns.  No  one  is  doing  that. 
RIVERA  Ivoice-overl:  Example:  case  leporting  to  public  health  officials  is  required  for  all  of 
the  following  diseases:  gonorrttea,  hepatitis,  German  measles,  and  mumps.  Case  reporting  is 
not  required  of  AIDS,  [to  Dr.  Brandt j  Wouldn't  it  be  logical,  then,  to  have  mandatory  case 
repotting  so  your  experts  here  in  Washington  or  at  the  CDC  in  Atlanta  will  know  exactly 
where  the  disease  is  going,  and  presumably  can  use  that  as  one  factor  in  the  evidence 
suggesting  where  it  came  fiom. 

Dr.  BRANDT:  At  the  present  time,  with  the  heightened  awareness  in  the  professional 
community  that  we  have  created  through  articles,  through  other  things,  we  believe  we're 
getting  virtually  all  the  cases  iqxMted  to  us. 

RIVERA  [voice-overj:  But  arc  they  getting  all  the  cases?  Example:  according  to  the  CDC. 
there  are  only  27  AIDS  cases  in  all  of  the  state  of  Texas.  But  20/20  has  learned  that  in  the  city 
of  Houston  alone  there  are  an  estimated  100  AIDS  cases. 

MAN  [addressing  meeting  in  Houston[:  I  am  an  internist  in  private  practice  here  in 
Houston  who  is  now  seeing  at  least  weekly  one  patient  with  AIDS,  or  some  depression  of 
their  immune  system. 
RIVERA  [voice-overj:  When  information  on  AIDS  was  first  published  in  April  of  1981, 
there  were  five  reported  cases  nationwide  and  two  deaths.  By  that  summer,  it  was  recognized 
as  a  serious  public  health  problem:  there  were  108  cases,  43  were  dead.  In  the  summer  of 
1982,  there  were  593  cases;  243  were  dead.  The  latest  figures:  there  are  over  1 ,400  reported 
AIDS  cases;  541  are  dead  —  and  that  is  just  the  official  body  count. 
Dr.  UNDA  LAUBENSTEIN,  New  Yortc  Unhwrslty  Medical  Center:  Things  are  getting 
worse.  There's  more  patients,  more  complexity  to  the  situation,  more  hysteria  and  no  easy 
answeis. 

RIVERA  [voice-overj:  In  March.  Dr.  Linda  Laubenstein  sponsored  this  international  AIDS 
conference  at  New  York  University  Medical  Center.  Since  this  is  ground  zero  for  this 
frightening  medical  mystery,  the  other  nations  affected  arc  kx>king  to  the  United  States  for 
research  leadership.  So  far,  tf>ey  say,  they  are  disappointed. 

Dr.  ROEL  COUTINHO,  Dutch  virologist:  !  think  I'm  a  bit  amazed  that  not  more 
research  has  been  dorte,  because  there  are  so  many  cases,  there  are  so  many  opportunities  to 
study  it. 

RIVERA:  In  fairness,  the  federal  government  does  claim  to  have  spent  almost  $15  million  in 
the  fight  against  this  epidemic,  but  most  critics  maintain  that,  up  until  now  at  least,  the  federal 
government  has  not  done  enough  fast  enough.  Example:  it  was  not  until  the  summer  of  1982, 
after  it  became  clear  that  AIDS  posed  a  threat  to  the  nation's  bkxxl  supply,  thai  the  National 
Institutes  of  Health,  the  major  source  of  research  fimding.  even  issued  their  request  for  grant 
applications  on  the  subject  of  AIDS.  As  of  today.  jiBt  18  percent  of  those  research  requests 
have  been  granted,  [voice-overj  Aside  from  the  classic  problems  associated  with  catastrophic 
illnes-s,  like  inability  to  work  and  inadequate  medical  insurance.  AIDS  victims  must  also  deal 
with  the  trauma  of  being  both  a  patient  and  a  pariah,  even  in  the  hospital. 
Mr.  RAMSAUR:  And  one  night  I  heard  tvw  of.  1  believe  they  were  the  nurse's  aides,  not  the 
actual  nurses,  standing  outside  my  door  sort  of  laughing  and  I  wouM  almost  say  placing  bets 
on,  now,  how  k>ng  is  this  one  gonna  last? 
RIVERA:  What  did  they  say,  exactly? 

Mr.  RAMSAUR:  "1  wonder  how  kmg  the  faggot  in  208  is  gonna  last." 
Dr.  ANTHONY  FAUCI,  National  kwtitutea  of  Health:  There's  no  question  and  no 
denying  that  there  is  a  feeling  among  members  of  any  of  a  number  of  professions,  or  >ist  the 
general  population,  that  patients  with  AIDS,  many  of  whom  are  homosexual,  arc  a  little  bit 
different.  I  tfiink  that  that  has  probably,  at  least  early  on.  led  to  a  little  bit  of  a  complacency 
about  the  approach  towards  this  disease. 


83 


RIVERA  Ivoice-overJ:  Dr.  Anthony  Fauci  is  a  top  govemmenl  researcher  The  anitudes  he 
is  talking  about  almost  lost  him  the  chatKe  to  work  with  the  very  patient  who  is  the  focus  of 
his  current  research. 
RON  RESIO,  AIDS  patient:  I  was  refused  at  this  hospital . . . 

RIVERA  [voice-over];  Thirty-sLx-year-old  Ron  Resio  was  refiiscd  admission  to  the  Clinical 
Research  Center  at  the  National  Institutes  of  Health,  despite  the  fact  that  he  had  been 
receiving  treatment  here  as  an  outpatient. 

Mr.  RESIO:  I  had  double  pneumonia,  confirmed  by  x-rays,  arxl  a  temperature  of  over  103. 1 
was  interviewed,  or  I  should  say  inquisitioned.  by  a  doctor  who  kept  calling  it  "the  gay 
plague." 

RIVERA  (voice-over}:  The  official  reason  for  the  refusal  was  the  feeling  that  his  case  did  not 
fit  into  the  facility's  long-range  research  plans,  (to  Mr.  Resio}  Huw  did  you  get  into  this 
hospital  then,  finally? 

Mr.  RESIO:  When  they  found  out  I  had  a  twin. 

RIVERA  [voice-over}:  The  attitude  toward  Ron  changed  dramatically,  when  government 
researchers  discovered  he  had  a  healthy  identical  twin  brother,  providing  (hem  a  textbook 
opportunity  to  search  for  a  cure.  Brother  Don  flies  into  Washington  for  two  days  every  three 
weeks  from  his  home  in  Vicksburg.  Mississippi,  where  he  lives  with  his  wife  and  children.  It 
is  Don's  healthy  whi'e  blood  cells  that  are  being  used  to  boost  Ron's  immune  system,  but  it  is 
not  easy  for  either  man. 

DON  RESIO,  brottWf  of  AIDS  patient:  It's  very  frustrating  to  come  up  here  every  three 
weeks  and  watch  parts  of  my  brother  disintegrate  —  watch  him  have  trouble  with  his  eyes 
one  time,  problem  with  his  lungs.  Kaposi's,  different  things  —  and  you  just  keep  asking 
yourself,  how  k>ng  can  that  go  on? 

[clip  of  memorial  march  for  AIDS  victims} 

RIVERA:  Whatever  your  personal  feelings  about  (he  homosexual  community,  the  basic 

complaint  of  these  candlelight  demonstrators  rings  tme:  until  it  was  discovered  that  this 

disease  posed  a  threat  to  the  nation's  bkxxj  supply  and  began  claiming  odier  less  controversial 

victims,  we  all  paid  a  k)t  less  attention  than  we  shoukJ  have  in  the  beginning,  [lo  Ron  ResioJ 

Do  you  ever  feel  like  just  giving  up? 

Mr.  RESIO:  Not  very  often.  I  think  one  of  the  things  that  makes  riK  a  good  patient  is  that  I 

am  a  fighter,  and  I  have  decided  that  I'll  be  the  first  one  to  make  it,  the  first  one  to  get  over 

this. 

HUGH  DOWNS:  We  can  hope  he  does.  It's  a  terrible  situation.  What  are  the  symptoms  of 

AIDS? 

RIVERA:  There  are  several  symptoms.  Hugh.  I  guess  the  first  most  obvious  one  is  swollen 

glands.  Then  those  bruise-like  markings  on  the  skin  you  saw  in  the  piece  itself;  weight  k>ss: 

persistent  fever:  night  sweats:  persistent  dry  cough;  persistent  unexplained  diarrhea.  Those 

are  the  most  corrunon  symptoms. 

DOWNS:  Just  today  there  were  some  reports  of  some  new  cases  —  women  who  had  been 
the  wives  or  bvers  of  AIDS  victims,  and  a  sanitation  worker  who  doesn't  fit  the  AIDS 
profile. 

RIVERA:  First  of  all,  the  doctors  aren't  sure  that  all  of  those  are  suspected  AIDS  cases, 
although  they  are  showing  the  early  symptoms.  The  point  is,  there  is  no  evidence  wfiaisoever 
that  just  casual  contact  with  an  AIDS  victim  will  get  you  the  disease;  the  best  evideixre  of  that 
is  the  fact  that  no  medical  personnel  —  doctors,  nurses  —  have  caught  it  from  their  patients 
over  the  last  four  years.  One  way  we  know  you  can  get  it,  though,  is  by  bkxxl  transfitsions  — 
getting  contaminated  okxxl  from  an  AIDS  victim.  And  that'll  be  the  focus  of  our  next  report. 
That's  the  real  threat  to  most  of  the  rest  of  us. 
DOWNS:  We'll  be  watching  that  next  week.  Thank  you.  GerakJo. 

—  6  — 


84 


Later  in  the  broadcast,  the  evolution  of  a  legend.  Steve  Fox  profiles  the  explosive  Bctte 
Midler.  But  next,  summer  is  almost  on  us,  and  people  are  paying  attention  to  their  figures. 
John  Stossel  pays  attention  to  cellulite,  that  embarrassing  fat.  right  after  this. 

[commercial  breaki 

DOWNS:  Summertime  is  coming,  time  to  get  into  shorts  and  swimsuits,  and  time  for 
millions  of  women  to  worry  about  how  they  look  in  a  bikini,  because  of  something  called 
cellulite  (CELL-u-lectJ  —  or  do  you  call  it  cellulite  (CELL-u-light|,  since  it  seems  to  be 
spelled  that  way?  Here  is  our  consumer  correspondent,  John  Stossel.  John? 

JOHN  STOSSEL:  It's  pronounced  both  ways,  actually.  Cellulite  is  thai  lumpy  or  dimply 
looking  fat  that  gathers  in  the  hips  and  thighs  of  some  women  We  asked  people  about  it  on  a 
beach,  and  got  strong  reactions.  Ion  camera}  What  do  you  think  of  cellulite? 

I8t  WOMAN:  1  think  it's  gross. 

2nd  WOMAN:  It's  really  ugly. 

3nl  WOMAN:  Ah.  it's  what  you  dread! 

STOSSEL:  What's  it  kmk  like? 

4th  WOMAN:  Orange  peels. 

5th  WOMAN:  Wrinkly  and  bumpy. 

eth  WOMAN:  Jelb. 

71h  WOMAN:  Not  smooth 

8th  WOMAN:  Yucky. 

MAN:  Big  flabby  thighs  on  girls.  I  don't  know.  I  like,  you  know,  lean  woman,  you  know? 

STOSSEL  {voice-over]'.  Lean  is  in  today. 

(clip  from  Richard  Simmons  Show] 

RICHARD  SUMMONS:  How  many  of  you  have  cellulite?  (audience  yells]  I  don't  think 

I'd  shout  about  it! 
STOSSEL  [voice-over]:  There's  k*s  of  advice  about  how  to  get  rid  of  it. 

WOMAN  [to  Richard  Simmons]:  I  Hy  exercising. 

Mr.  SIMMONS:  And  what  happens? 

WOMAN:  I  get  discouraged,  because  it  doesn't  go  away. 

Mr.  SIMMONS:  It's  not  going  to  go  away  right  away,  but  if  you  continue  to  exercise,  it 

will. 
[to  exercise  class]  Come  on,  get  rid  of  that  cellulite! 
STOSSEL  [voice-over]:  In  fact,  exercise  may  not  help.  That's  one  of  the  weird  things  about 
cellulite  —  exercise  doesn't  always  lake  it  away.  Even  some  athletes  and  dancers  who 
exercise  all  the  time  still  have  cellulite.  And  many  thin  women  have  it;  just  visit  diis  cellulite 
salon.  [10  woman  in  salon]  I  don't  get  it  —  you're  thin,  you're  five-eight?  You  weigh. . . 

WOMAN:  One-fifteen. 

STOSSEL:  And  you're  worried  about  cellulite?  Why? 

WOMAN:  I  don't  tfiink  it  mancrs  how  thin  you  are  whether  you  have  cellulite  or  not.  It's  >ist 

a  very  ugly  skin  condition,  and  I  have  it  right  here.  I'm  afraid  to  turn  around  half  the  time. 

STOSSEL  [voice-over]:  Yet  many  doctors  say  tfiere's  no  such  thing  as  cellulite. 

Dr.  LAWRENCE  SIEFERT,  CalHbmta  SocMy  of  Plastic  SurgMns:  Cellulite.  ak>ng 
with  some  other  products  firom  France,  is  an  import,  but  in  this  case  it  doesn't  mean 
anything.  It's  a  media  hype  term  that  is  a  fancy  name  for  fat.  It's  fat  in  Paris,  fat  in  Pomona, 
it's  the  same  fat. 
STOSSEL  [voice-over]:  It  is  tnie  that  when  scientists  kx>k  at  fat  cells  from  dimply  thighs 

—  7  — 


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An  epidemic  of  myths  and  misperceptions. 


The  History  Of  An  Epidemic 


By  Robert  Bazell 


1  STEPPED  OFF  a  plane  from  Port-au-Prince  the  other 
day,  and  Ihe  immigration  officer  at  Kennedy  Airport 
refused  to  touch  my  passport.  Because  I  had  been  to  Haiti, 
he  was  afraid  he  might  catch  AIDS  from  me. 

In  A  Distant  Mirror,  Barbara  Tuchman  notes  that  even 
though  the  Black  Death  of  1348-50  lulled  one  third  of  the 
population  living  between  India  and  Iceland,  the 
disorders  of  the  time  could  not  be  attributed  to  that  cause 
alone.  There  were  many  other  problems  which  "existed 
prior  to  the  Black  Death  and  continued  after  the  period  of 
the  plague  was  over." 

The  effects  of  AIDS  cannot  be  understood  without 
considering  the  preexisting  problems  of  certain  groups — 
not  only  the  homosexuals,  drug  addicts,  hemophiliacs. 
and  Haitians  to  whom  AIDS  is  a  plague,  but  also  the 
medical  reseaitl*  establishment  and  the  mass  media.  The 
immigration  officer's  reaction  is  part  of  a  hystena  afflicting 
many  people  in  recent  months,  especially  on  the  East  and 
West  Coasts:  AIDS  SHOCXER  AT  BEIXEVUE,  screams  a 
headline  in  the  New  York  Post.  "One  thing  we  do  know  lor 
sure,"  shouts  Ceraldo  Rivera,  "this  dreadful  disease  has 
spread  well  beyond  its  original  bounds  "  Suddenly  a  lot  of 
people  fear  that  they  and  their  families  might  suddenly 
catch  some  mysterious,  fatal  illness  which  until  now  has 
been  confined  to  society's  outcasts. 

This  is  indeed  a  dreadful  disease,  a  horrible  epidemic 
that  will  kill  thousands  before  it  is  over.  It  is  certainly  the 
most  serious  public  health  emergency  in  the  United  States 
since  polio  was  controlled-  The  cause  is  unknown,  and 
there  is  no  cure.  But  AIDS  is  not  going  to  kill  your 
grandmother. 

In  1981,  when  the  first  cases  were  identified,  AIDS  had 
no  name.  Doctors  in  New  York  and  San  Francisco 
suddenly  saw  relabvely  large  numbers  of  pabents  with 
rare  diseases — particularly  a  carwer  called  Kaposi's 
sarcoma  and  pneumonia  caused  by  the  bacterium 
Pneumocystitis  carinii.  AD  of  the  victims  were  young 
homosexual  men.  Doctors  quickly  learned  that  the  victims 
were  contracting  these  rare  diseases  because  part  of  their 
immune  system — certain  white  blood  cells  cruaal  lo  the 
body's  defense  agaiiut  mfection — had  been  destroyed.  It 
was    not    until    last    summer    that    someone    (there    is 

Robert  Bazell,  who  studied  immunotogy  at  the  University 
of  California  at  Berkeley,  is  the  saence  correspondent  lor 
NBC  News. 


confusion  about  who)  thought  of  the  name  Acquired 
Immune  Deficiency  Syndrome.  Later,  when  investigators 
from  the  federal  government's  Centers  for  Disease 
Control  (CDC)  searched  their  records,  they  realized  the 
disease  had  first  appeared  in  New  York  in  1978,  and  that 
there  had  been  at  least  seven  cases  in  1979. 

When  Ihe  doctors  m  New  York  and  San  Francisco  first 
recognized  the  syndrome,  they  contacted  the  CD  C.  in 
Atlanta.  The  CD.C.  tracks  down  the  causes  of  unex- 
plained outbreaks  of  illness.  It  is  staffed  by  physicians  and 
scientists  who  are  highly  competent,  usually  young,  and 
invariably  willing  to  work  for  less  money  than  they  could 
make  on  the  outside  TTiey  en(oy  the  role  of  medical  detec- 
bve.  Often  their  tasks  are  relatively  trivial:  finding  the 
tainted  macaroni  salad  which  gave  diarrhea  to  dozens  at  a 
crowded  picnic.  Sometimes  Ihe  challenge  is  much  greater, 
as  when  CDC.  scientists  identified  the  bacterium  respon- 
sible for  Legionnaires  Disease,  and  turned  a  mystery  killer 
into  a  treatable  ailment 

Much  has  been  said  and  wntten  about  the  allegation 
that  because  AIDS  primarily  affects  homosexuals  and  drug 
addicts,  the  federal  government  was  lax  in  responding  to 
it.  I  carmot  say  that  more  researchers  and  case  workers 
would  nol  have  been  assigned  if  this  were  a  fatal  affliction 
of  mvestment  bankers.  But  it  would  be  difficult  to  make  a 
case  that  the  CDC  could  have  accomplished  more  than  it 
did  in  the  initial  phases  of  ttie  investigation. 

The  science  of  epidemiology  ccmcentrates  on  finding  the 
one  exposure  shared  by  those  infected  by  an  ailment  and 
not  by  those  unaffected  by  it.  "At  the  picnic  did  you  eat  the 
potato  salad  or  the  macaroni  salad?"  In  the  early  stages  of 
the  investigation  in  1981,  theC.D.C.  saentisis exhaustive- 
ly interviewed  every  AIDS  victim  they  could  find.  They 
tested  samples  of  the  victims'  blood,  urine,  saliva,  and 
feces  for  every  known  bactenum,  virus,  and  parasite. 
Many  theories  were  put  forward:  that  the  amyl  nitrate 
stimulants  kno%wn  as  "poppers"  were  the  cause,  that 
certain  bathhouses  or  bars  might  be  involved.  The  labora- 
tory tests  found  nothing.  The  only  fact  that  emerged 
<rom  the  interview  was  that  many  of  the  victims  were 
having  a  lot  of  sex  with  a  lot  of  other  men.  Many  had  had 
hundreds  of  sex  partners  a  year,  and  some  had  had  more 
than  a  thousand. 

Ironically,  the  investigation  moved  faster  at  the  begin- 
ning stages  precisely  because  the  disease  was  affecting 
pnmanly  people  whom  most  of  society  and  the  mass  me- 


14      THE  NEW  REPUBLIC 


93 


•di»  tend  to  ignore  During  those  first  months  CD  C  sci- 
entists did  not  have  to  contend  with  hystencal  inqumes 
from  citizens  and  public  officials  They  did  not  have  to 
spend  much  time  answering  reporters'  questions,  because 
reporters  weren't  calling. 

Between  1979  and  the  end  of  1981.  280  cases  had  been 
diagnosed  and  reported  to  the 
CDC  225  in  1981  alone.  The 
number  seemed  to  be  increas- 
ing exponentially,  doubling  ev- 
ery six  months.  The  investiga- 
tors saw  that  AIDS  had  spread  to 
drug  addicts,  to  Haihans.  to  he- 
mophiliacs, and  to  children. 
They  realized  that  75  percent  of 
the  victims  who  had  had  the 
disease  for  a  year  and  a  half  or 
more  were  dead.  And  most  im- 
portant, it  became  incrcasinj^lv 
clear  that  what  was  causing  the 
disease  was  something  "new": 
not  the  familiar  bacterium  wait- 
ing to  be  found  in  the  macaroni 
salad,  but  an  agent  to  which  hu- 
man beings  had  never  pre- 
viously been  exposed.  At  this 
point  it  was  obvious  that  tradi- 
tional epidemiology  and  the  re- 
sources of  the  CDC.  were  not 
enough.  A  lot  of  basic  research 
was  needed.  And  here  there 
was  a  lag. 

The  Nahonal  Insbtufes  of 
Health  dominates  medical  re- 
search in  the  Urated  States.  The 
N.I.H.  is  not  set  up  as  the 
CDC.  is  to  respond  quickly  to 
emergencies.  It  funds  research 
and  researchers  to  pursue  long- 
term  goals  that  are  established 
by  Congress  and,  indirectly,  by 
the  lobbying  groups  that  influ- 
ence Congress.  That  is  why  the 
largest  part  of  the  N.I.H.  budg- 
et pays  for  studies  of  diseases 
which  might  kill  a  68-year-old 
white  male  Senator.  Not  sur- 
prisingly, the  top  scientists  fol- 
low the  money.  Most  spend 
their  time  on  problems  such  as 
cancer  and  heart  disease.  The  N.I.H.  offered  no  money  for 
AIDS  research  in  1982.  But  even  if  it  had.  few  top  scientists 
would  have  jumped  in.  From  the  outside  it  seemed  the 
CDC.  still  might  come  up  with  a  quick,  easy  explanation, 
and  few  big-time  scientists  would  have  been  willing  to 
switch  to  research  that  might  prove  a  waste  of  time 

As  a  result  the  gap  was  filled  by  scientists  who,  like  Dr 
lames  Oleske  of  the  New  Jersey  School  of  Medicme  and 


BT  HAtlY   PINCUSFOt   THE  NIW   RE  PUS 


Denhstry  ui  Newark,  stand  below  the  top  rung.  Dr. 
Oleske,  among  the  first  to  study  AJDS  m  children,  set  off 
much  of  the  current  panic  atxjut  AIDS 

The  mothers  of  most  of  the  children  who  have  AIDS  are 
drug  addicts,  and  other  researchers  had  assumed  that  the 
children  contracted  the  disease  from  their  mother's  blood 
m  the  womb.  But  Dr  Oleske 
announced  at  a  press  confer- 
ence, m  dozens  of  media  inter- 
views, and.  months  later,  in  a 
paper  in  the  journal  of  Ihe  Ameri- 
can Medical  Association  that  AIDS 
seemed  to  be  spreading  m  the 
families  bv  casual  contact,  by  in- 
haling the  breath  of  a  victim  or 
by  kissing.  Several  other  soen- 
tists  say  Dr.  Oleske's  work  is 
flawed  (As  Dr.  Arye  Ruben- 
stein,  Professor  of  Pediatncs 
and  Director  of  N .  1 .  H  research 
on  AIDS  at  the  Albert  Einstein 
College  of  Medicine  in  the 
Bronx,  diplomaticallv  put  it. 
"My  feeling  was  that  the  infor- 
mation included  in  his  JAMA 
paper  does  not  yet  gusHfy  the 
(ar-reachmg  conclusion  that 
there  is  an  intrafamilial  spread 
through  casual  contact .")  They 
contend  he  did  not  check  thor- 
oughly enough  whether  the 
mothers  had  a  history  of  drug 
use  or  bisexual  lovers.  Some  of 
the  cases,  they  say,  might  not 
have  even  been  AIDS,  and  some 
were  investigated  after  the  vic- 
tims had  died  He  was  the 
first — and  to  my  knowledge  he 
remains  the  orJy — scientist  to 
claim  ttiat  AIDS  can  be  spread  by 
casual  contact.  But  a  lot  of  re- 
porters picked  up  on  that  story. 
Soon  hospital  workers,  prison 
guards,  undertakers,  and  many 
others  were  regarding  AJDS  vic- 

bms  as  lepers  'V "y 

No  group  has  suffered  more    u 
from  bad  science  than  Haitian    1 
immigrants      When     the     first  "* 
cases  appeared.  American  doc- 
tors intprviewed  the  victims    The  doctors  spoke  mostly     V 
English.  Occasionally  they  found  someone  who  could  ask     / 
the  questions  m  French   But  the  recent  immigrants  under-     \ 
stand  only  a  little  French,  and  even  less  English   None  of 
the  original  interviews  was  conducted  in  their  native  Cre- 
ole. Nor  did  the  doctors  bother  to  learn  much  about  the 
Haitian  culture.  They  simply  asked.  "Are  you  a  homosex- 
ual? Do  you  shoot  drugs?  "  When  the  answer  to  both  ques- 


AUCUST  1.  I"(83       15 


26-097    O— 83- 


94 


bons  was  no,  the  doctors  declared  thai  Haitians  were  sus- 
ceptible to  AJDS  for  some  myslenous  reason. 

Sudder\ly  there  was  a  popular  notion — and  it  seemed 
ever  so  logical — that  AIDS  had  originated  in  Haiti  What 
better  place  for  a  deadly  new  disease  to  spring  up  than  the 
land  of  voodoo  and  poverty?  And  who  better  to  blame 
than  Haitian  immigrants?  Poor,  black,  and  speaking  little 
English,  they  were  already  facing  more  discrimination 
than  almost  any  other  group  in  America.  So  why  not 
blame  them  for  AIDS  too?  My  experience  at  the  airport 
illustrates  the  attitude  about  Haitians.  About  eighty  Hai- 
tians in  the  United  States — out  of  four  hundred  thou- 
sand— have  AIDS.  But  because  of  the  fear  of  AIDS,  hun- 
dreds of  immigrants  have  lost  their  jobs  or  have  been  told 
they  will  not  get  one. 

There  is  simply  no  evidence  to  support  the  soolled 
"Haitian  connection."  When  Haitian  doctors  interviewed 
the  victims,  they  learned  that  at  least  one  quarter  had 
worked  as  mate  prostitutes  meeting  foreign  gay  men, 
mostly  Americans,  in  ban  in  Port-au-Pnnce  and  in  the 
resort  areas  of  Cap  Haitien.  These  Haitian  men  did  not 
consider  themselves  homosexual.  In  fad,  there  is  a  strong 
cultural  taboo  against  homosexuality  in  Haiti.  Many  of 
these  men  were  married  with  families.  They  had  sold 
themselves  in  order  to  survive. 

In  Haiti  1  learned  that  AIDS  is  a  growing  problem  there. 
At  least  one  hundred  fifty  cases  have  Ijeen  diagnosed  But 
there  is  no  evidence  that  AIDS  began  there.  It  probably 
came  from  the  United  States.  In»Haiti  many  victims,  like 
the  victims  among  the  immigrants  to  the  United  Stales, 
worked  as  male  prostitutes.  Others  are  their  wives  and 
girlfriends.  Folk  doctors,  who  provide  much  of  the  poor 
Haitians'  medical  care,  often  inject  several  patients  with 
the  same  hypodermic  needle  without  cleaning  it.  This 
practice  may  be  spreading  AJDS  among  Haitians  the  way  it 
is  spread  among  drug  addicts  in  the  US.  Still,  there  is  no 
reason  to  say  that  AIDS  is  a  Haitian  disease  or  that  Haitians 
get  it  for  reasons  that  are  different  from  everyone  else's. 

Some  gay  organizations  and  gay  publications  have  re- 
peated the  allegation  that  AJDS  originated  in  Haiti.  One 
story  has  it  that  during  voodoo  rituals  Haitians  drink  pigs' 
blood,  and  can  contract  an  African  swine  virus  wfuch 
infects  Haitian  pigs.  There  is  no  evidence  whatsoever  to 
support  this  tale.  Although  gays  have  protested  vocifer- 
ously about  the  discrimination  they  have  suffered  because 
of  AJDS,  some  elements  of  the  gay  community  seem  to 
have  no  qualms  about  abetting  discrimination  against  oth- 
ers. There  is  a  strong  desire  among  some  gays  to  say  that 
AIDS  came  from  somewhere — anywhere — ebe. 

It  is  ui>likely  we  will  ever  learn  where  AIDS  originated. 
Within  a  year  or  two  scientists  will  probably  identify  a 
virus  that  causes  it.  But  no  one  will  be  able  to  say  where 
that  virus  underwent  the  genetic  mutation  that  enaljles  it 
to  infect  humans  and  destroy  white  blood  cells  We  can 
say  that  once  the  virus  appeared,  one  of  the  main  reasons 
it  became  such  a  public  health  problem  was  the  promiscu- 
ity of  many  gay  men. 

Homosexuality,  it  has  often  been  noted  in  the  discus- 


sions of  AIDS,  IS  as  old  as  mankind  Some  people  have 
always  had  sex  with  a  lot  of  other  people  Bui  the  emer- 
gence of  homosexuality  as  an  accepted  culture  in  the  last 
decade  enabled  thousands  of  gay  men  to  indulge  in  the 
age-old  male  fantasy  of  having  sex  with  whomever  you 
want  as  often  as  vou  want.  A  network  where  thousands  of 
people  are  interacting  sexually  is  as  rich  an  environment 
for  the  dissemination  of  I'isease  as  one  could  possibly 
imagine.  This  is  particularly  so  when  much  of  the  sex  is 
anal,  wnth  tiny  sores  in  the  rectum  allowing  for  the  mixing 
of  semen  and  blood  and  often  the  blood  of  one  sex  partner 
with  the  blood  of  the  other. 

Before  AIDS  appeared,  many  gav  men  were  alreadv 
victim  to  dozens  of  tiactenal,  viral,  and  parasitic  infections 
which  had  been  rare  until  recently.  When  a  fatal  disease 
found  its  way  into  the  network,  its  rapid  spread  was 
inevitable — first  among  the  most  promiscuous,  then 
throughout  the  gay  community.  Whenever  it  started, 
AJDS  quickly  became  a  disease  of  male  homosexuals.  More 
than  70  percent  of  the  victims  are  gay  men.  The  evidence 
suggests  that  from  the  homosexual  matrix  it  spread  to  i.v. 
drug  users,  and  then  to  the  few  dozen  people  who  have 
gotten  it  from  transfusions  and  to  the  few  dozen 
hemopfiiliacs  who  have  gotten  it  from  Factor  8,  a  product 
made  from  blood  which  they  must  mject  to  make  their 
own  blood  clot.  Women  who  have  contracted  AIDS  (the 
CD  C.  knows  of  110  female  victims  in  the  United  States) 
got  it  either  from  bisexual  lovers  or  from  dirty  needles. 
The  few  dozen  child  victims  almost  certainly  got  it  from 
their  mother's  blood  while  in^he  womb  and  not  from  any 
casual  contact. 

FACED  with  the  possibility  of  contracting  a  fatal 
illness,  many  gay  men  have  thought  hard  about  their 
lifestyle.  The  issue  has  been  raised  frequently  in  gav 
publications.  But  even  though  gays  have  criticized 
government  officials,  most  officials  dealing  with  AIDS 
have  tried  not  to  sit  in  judgment  on  people's  behavior — no 
matter  how  much  that  behavior  may  have  been 
responsible  for  the  spread  of  the  disease.  If  AIDS  were 
magicaDy  to  disappear  and  many  gay  men  were  to  resume 
widespread  promiscuity,  there  is  a  good  chance  that  some 
other  horrible  disease  would  find  its  way  mto  the  gay 
population  and  then  spread  to  others.  One  need  not  be  a 
Moral  Majority  moralist  to  raise  questions  about  the  fast 
life;  there  are  powerful  medical  reasons  for  doing  so,  and 
for  heterosexuals  as  well  as  homosexuals.  (On  July  2  |ay 
Mathews  of  The  Washinj(ion  Post,  dting  C.D.C.  figures, 
reported  significant  declines  in  the  numbers  of  cases  of 
syphilis  and  gonorrhea  since  the  beginning  of  the  year. 
Several  health  officials  speculate  that  the  recent  herpes 
scare  has  contributed  to  the  decline.) 

In  the  past  few  months  the  N.IH.  has  responded.  It  has 
awarded  millions  of  dollars  in  research  grants,  and  some 
very  good  saentists  have  turned  their  attention  to  AIDS.  It 
is  now  certam  that  glory  awaits  the  one  who  discovers  the 
cause  of  or  cure  for  the  disease.  Scientists  are  using 
medicine's  most  complex  and  modem  tecfinologies.  It 


ALCLST  1.  \<)»j      i; 


95 


mav  lake  a  few  years,   but  il  is  a  good  bel  they  %vill 
succeed. 

But  based  on  what  is  already  known,  and  based  on  the 
behavior  of  viruses,  parbcularly  hepatitis  B  that  aHects  the 
same  groups,  it  is  possible  to  sort  some  things  out  now 

— Despite  the  hysteria,  AIDS  is  not  highly  contagious 
All  the  evidence  indicates  it  can  be  transmitted  only  by 
sexual  contact  or  mixing  of  blood;  even  then  it  requires  re- 
peated exposures.  AIDS  has  been  around  long  enough  that 
if  it  could  be  caught  by  breathing  the  air  or  in  some  other 
casual  way,  there  would  be  many  cases.  There  are  none. 
Thousands  of  gay  men  have  had  sex  with  AIDS  victims  and 
have  not  gotten  it.  A  lot  of  people  are  waiting  arwiously 
because  the  disease  can  appear  six  months  to  two  years 
after  exposure,  but  AJDS  is  certainly  not  anywhere  nearly 
as  contagious  as  the  Black  Death  of  the  Middle  Ages 

— There  are  more  than  seventeen  hundred  cases  now, 
•nd  theie  will  be  mace  than  thirty-lour  hundred  six 
months  from  now  But  it  is  not  likely  there  will  be  sixty- 
eight  hundred  a  year  from  now  Almost  certainly,  the 
number  of  cases  is  not  going  to  double  every  six  months 
as  it  has  since  the  onset  of  the  epidemic.  At  some  point  the 
disease  %vill  have  swept  through  the  susceptible 
populations  and  the  number  of  new  cases  will  level  off 

— It  is  unlikely  that  everyone  who  is  infected  *vill  get  the 


fatal  disease.  Most  viruses  affect  people  to  different  de- 
grees It  would  be  surprising  if  AIDS  were  different  Some 
people  ought  get  a  "mild  case"  and  act  as  carriers  but  not 
suffer  the  complete  immune  deficiency. 

— Another  factor  limiting  the  spread  of  AIDS  is  that 
while  men  can  transmit  it  to  women  through  sexual  con- 
tact, there  is  little  evidence  that  women  can  give  it  to  men. 
Thus  it  will  not  spread  like  syphilis  or  gonorrhea 

— Finally,  as  long  as  AIDS  receives  close  attention  from 
the  media  there  will  be  reports  of  people  who  contracted  it 
through  some  route  other  than  through  sex,  blood,  or 
blood-contaminated  needles.  It  is  not  easy  to  get  honest 
answers  about  peoples'  sex  lives  and  drug-taking  habits 

At  the  end  of  The  Plague.  Camus  notes  that  the  bacillus 
never  really  disappears,  and  reflects  gloomily  that  "per- 
haps the  day  would  come  when  it  would  rouse  up  its  rats 
again  and  send  them  forth  to  die  in  a  happy  dty  "  His 
warning  might  apply  equally  well  to  Alt)S,  because  a  mu- 
tant variant  of  the  AIDS  vims  or  some  new  organism  could 
appear  anytime.  Even  if  mterferon,  recombinant  D  N.A., 
or  one  of  the  other  wonders  of  modem  medicine  provides 
a  cure  for  AIDS  or  a  vaccine  to  prevent  it,  health  authorities 
and  gay  men  would  do  well  to  remember  the  dangers  to 
gays  and  others  that  a  return  to  the  old  pattern  of  massive 
promiscuity  would  create. 


96 

Mr.  Walker.  Mr.  Brownstein,  I  gather  from  your  responses  to 
some  of  the  questions,  and  also  what  you  said  in  your  testimony, 
you  see  no  evidence  within  the  Public  Health  Service  that  there  is 
a  feeling  among  the  CDC  or  the  NIH  scientists  that  hemophiliacs 
are  expendable. 

Mr.  Brownstein.  No,  but  I  would  like  to  answer  that  more  than 
yes  or  no. 

There  was  a  comment  made  earlier  about  if  this  happened  to 
Norwegians  or  tennis  players,  there  would  be  a  different  response. 

Quite  frankly,  hemophiliacs  do  not  represent  any  particular 
group  that  has  been  stigmatized  or  against  which  there  has  been 
discrimination;  so  we  have  received  a  very  positive  response  from 
all  the  organizations  we  are  dealing  with. 

I  am  hearing,  and  I  have  heard,  these  other  comments  from 
other  groups,  from  the  other  groups  identified  as  being  as  high 
risk,  and  it  has  not  been  my  experience,  but,  you  know,  there  has 
never  been  discrimination  on  that  basis,  against  hemophiliacs. 
There  has  been  discrimination  against  hemophiliacs  with  respect  to 
employment,  and  so  on  and  so  forth,  being  labeled  as  disabled,  and 
so  on,  but  not  quite  in  the  same  regard. 

Mr.  Walker.  I  appreciate  your  statement  on  that. 

Mr.  Endean,  you  said  it  took  the  Federal  Government  3  years  to 
act  on  AIDS.  Isn't  it  true  that  HHS  officials  dispatched  epidemiolo- 
gists to  New  York  City  and  California  immediately  after  the  first 
five  cases  were  reported  in  Los  Angeles  in  June  of  1981? 

Mr.  Endean.  I  can't  speak  to  Los  Angeles. 

I  am  not  sure.  My  impression  was  that  the  epidemiological  ef- 
forts that  were  underway  were  in  New  York  City  and  not  else- 
where around  the  country. 

Certainly  all  of  us  would  have  to  agree  that  the  epidemiological 
efforts  to  this  point  have  been  utterly  and  totally  insufficient. 

Mr.  Walker.  Well,  I  am  asking  you  to  confirm  the  facts  here.  In 
other  words,  you  don't  have  knowledge  of  the  fact  that  the  epidemi- 
ologists did  begin  acting  after  the  first  five  cases  were  discussed. 
You  don't  have  knowledge  of  that. 

Mr.  Endean.  Yes. 

Mr.  Walker.  Isn't  it  true  the  first  AIDS  victim  was  admitted  to 
NIH  in  mid-1981? 

Mr.  Endean.  I  can't  speak  to  that. 

Mr.  Walker.  Thank  you,  Mr.  Chairman. 

Mr.  Weiss.  Thank  you  very  much,  Mr.  Walker.  I  want  to  thank 
our  panelists  for  excellent  testimony. 

Mr.  Craig.  The  question  of  confidentiality  is  a  very  valid  ques- 
tion. How  are  we  to  get  the  kind  of  information  and  material  nec- 
essary. This  question  just  came  to  mind,  as  you  talk  about  national 
legislation  to  assure  confidentiality  and  to  gain  the  confidence  of 
the  people  that  that  information  would  have  to  be  sought  from. 

Is  there  a  problem  with  a  national  law  versus  State  laws  that 
say,  certain  types  of  behavior  that  these  communities  might  be  en- 
gaged in  is  an  illegal  type  of  behavior  within  the  State  confines, 
and  therefore,  the  search  for  information,  although  the  Federal  law 
might  blanket,  they  would  run  into  the  problem  of  violating  State 
law?  Is  that  a  problem  that  anyone  in  this  area  has  discussed? 


97 

Ms.  Apuzzo.  Sir,  we  are  going  to  hear  testimony  from  Lambda 
Legal  Defense,  which  has  coproposed  this,  and  it  sounds  like  one  of 
those  questions  that  we  might  best  leave  to  the  attorneys  to  define 
the  parameters  of. 

Mr.  Craig.  Thank  you.  Probably  a  valid  suggestion. 

Mr.  Weiss.  Mr.  Craig,  thank  you. 

Mr.  McCandless? 

Mr.  McCandless.  In  May  of  1983,  the  French  Government  an- 
nounced its  decision  to  ban  the  importation  of  American  blood  be- 
cause of  its  possible  contamination  with  AIDS. 

We  learned  earlier  that  there  is  no  test  to  determine  whether  or 
not  blood  has  been  donated  by  someone  with  AIDS  before  it  is 
given  as  a  transfusion.  Is  that  correct? 

Mr.  Brownstein.  That  is  correct,  and,  in  fact,  at  this  point  it  has 
not  been  definitively  established  scientifically  that  it  is  a  transmis- 
sible agent  through  the  blood. 

Mr.  McCandless.  Is  there  any  parallel  between  this  and  the 
problems  we  have  had  with  hepatitis  being  transmitted  through 
blood  transfusions? 

Mr.  Brownstein.  I  would  defer  to  Dr.  Bove,  who  will  be  testify- 
ing later  this  afternoon. 

Mr.  McCandless.  Do  you  know  if  we  import  blood  for  the  pur- 
pose of  creating  the  necessary  activities  to  help  the  hemophiliacs? 

Mr.  Brownstein.  No,  we  do  not  import  blood  for  that  purpose. 

Most  of  the  blood  fractionation  is  done  in  the  United  States  by 
four  major  pharmaceutical  companies.  In  some  small  amounts, 
blood  does  come  from  European  concerns. 

For  the  most  part,  the  blood  products  that  are  used  by  hemophil- 
iacs are  exported  to  other  countries,  and,  in  fact,  the  notion  of  bans 
on  blood  from  the  United  States  are  somewhat  overstated. 

I  have  just  returned  from  the  Congress  of  the  World  Federation 
of  Hemophilia  in  Stockholm,  and  some  of  these  reports  are  exag- 
gerated, and  I  would  be  pleased  to  elaborate  more  on  that  at  some 
other  time,  if  you  wish. 

Mr.  McCandless.  Thank  you,  Mr.  Chairman. 

Mr.  Walker.  Mr.  Chairman,  since  there  do  seem  to  be  some 
questions  for  the  panelists,  could  we  have  permission  to  submit 
questions  in  writing  to  the  witnesses,  so  we  could  have  those  to 
flesh  out  the  record  where  some  questions  may  still  remain? 

Mr.  Weiss.  I  am  sure  the  panelists  would  have  no  objection  to  re- 
sponding to  questions  submitted  in  writing. 

Without  objection,  we  will  leave  the  record  open  for  the  10  days 
after  the  close  of  the  hearings  for  that  purpose. 

Thank  you  all  very  much  for  very,  very  effective  testimony. 

What  has  been  demonstrated  not  just  in  your  panel,  but  in  the 
hearings  up  to  this  point,  is  that  there  is  a  tremendous  lack  of  hard 
information  about  the  Government's  AIDS  activities.  That  is  what 
we  are  all  struggling  with. 

Thank  you  very,  very  much. 

The  next  panel  includes  professionals  from  the  medical  and  re- 
search communities  who  have  played  critical  roles  in  moving  us 
closer  to  unraveling  the  puzzles  of  this  devastating  affliction. 


98 

I  would  like  to  call  to  the  witness  table  Dr.  Frederick  Siegal,  Dr. 
Mathilde  Krim,  Dr.  Marcus  Conant,  Dr.  Joseph  Bove,  and  Dr. 
Bruce  Voeller. 

While  they  are  approaching  the  witness  table,  let  me  begin  by 
introducing  the  panel. 

Dr.  Marcus  Conant,  professor  of  dermatology  at  the  University  of 
California  Medical  Center  at  San  Francisco,  and  president  of  the 
board  of  directors  of  the  National  AIDS-KS  Foundation; 

Dr.  Frederick  Siegal,  chief  of  the  division  of  clinical  immunology, 
at  the  Mount  Sinai  School  of  Medicine  and  City  University  of  New 
York; 

Dr.  Mathilde  Krim,  head  of  the  Interferon  Laboratory  at  Memo- 
rial Sloan-Kettering  Cancer  Center  in  New  York,  and  chairperson 
of  the  board  of  trustees  of  the  AIDS  Medical  Foundation  in  New 
York; 

Dr.  Bruce  Voeller,  biologist,  head  of  the  Mariposa  Foundation  in 
Los  Angeles.  Dr.  Voeller  has  held  professorships  at  the  Rockefeller 
Institute,  Hunter  College,  and  Harvard  University;  and 

Dr.  Joseph  Bove,  professor  of  laboratory  medicine,  and  director, 
blood  transfusion  service  at  Yale  New  Haven  Hospital.  Dr.  Bove 
will  be  addressing  the  issue  of  AIDS  and  blood. 

I  would  appreciate  it  if  you  would  stand  at  this  point.  Do  you 
affirm  to  tell  the  truth,  the  whole  truth,  and  nothing  but  the 
truth? 

Dr.  Conant.  I  do. 

Dr.  Siegal.  I  do. 

Dr.  Voeller.  I  do. 

Dr.  Krim.  I  do. 

Dr.  Bove.  I  do. 

Mr.  Weiss.  Again,  may  I  suggest  that  for  the  sake  of  time  limita- 
tions, that  you  summarize  your  prepared  statements.  Of  course,  the 
entire  text  of  your  statement  will  be  entered  into  the  record. 

We  will  begin  with  Dr.  Conant  and  proceed  to  Dr.  Siegal,  Dr. 
Krim,  Dr.  Voeller,  and  Dr.  Bove. 

STATEMENT  OF  DR.  MARCUS  CONANT,  PROFESSOR  OF  DERMA- 
TOLOGY, UNIVERSITY  OF  CALIFORNIA  MEDICAL  CENTER,  SAN 
FRANCISCO,  CALIF. 

Dr.  Conant.  Thank  you,  Mr.  Chairman. 

Mr.  Weiss.  May  I  indicate  for  the  benefit  of  the  observers  that 
we  will  take  a  brief  break  after  this  panel  concludes  its  testimony 
and  before  questioning  begins. 

Dr.  Conant.  I  am  Marcus  Conant,  codirector  of  the  Kaposi  Sarco- 
ma Clinic  in  San  Francisco. 

We  would  like  to  thank  you  and  the  members  of  the  committee 
for  convening  this  hearing,  and  my  complete  testimony,  as  you  in- 
dicated, has  been  submitted  to  your  staff. 

I  would  like  to,  in  my  brief  comments,  focus  in  on  just  three  as- 
pects of  the  problem  as  we  see  it  as  medical  researchers  involved 
with  this  problem  in  a  community  that  has  more  per  capita  gay 
men  than  any  other  community  in  the  United  States. 


99 

Researchers  who  are  in  a  major  medical  center  right  at  the  edge 
of  that  community,  medical  researchers  who  are  seeing  daily  new 
cases  of  patients  admitted  with  Kaposi  sarcoma  and  Pneumocystis. 

The  failure  to  respond  to  this  epidemic  now  borders  on  a  nation- 
al scandal. 

The  second  point  is  that  this  body,  Congress,  and  indeed  the 
American  people,  have  been  misled  about  the  response. 

We  have  been  led  to  believe  that  the  response  has  been  timely 
and  that  the  response  has  been  appropriate,  and  I  would  suggest  to 
you  that  that  is  not  correct. 

Finally,  I  would  like  to  spend  a  few  minutes  from  my  perspective 
suggesting  to  you  what  needs  to  be  done  immediately,  if  we  are  not 
going  to  face  a  catastrophe  of  undeniably  unbelievable  proportions. 

First,  the  issue  of  failure  to  respond:  I  think  that  has  created  two 
major  epidemics.  The  first  epidemic  is  the  epidemic  of  AIDS  as  we 
now  know  it,  and  the  second  is  the  epidemic  of  fear  sweeping  our 
country. 

There  are  now  1,900  cases  of  AIDS  in  this  country,  and  900  of 
those  young  people  are  dead. 

The  epidemic  is  now  doubling  every  6  months. 

We  hear  that  changes  in  lifestyle  may  make  the  problem  go 
away.  I  would  suggest  to  you  that  many  members  of  the  gay  com- 
munity that  I  see  as  patients  have  clearly  changed  their  lifestyles. 

If  you  were  confronted  by  a  disease  that  has  a  mortality  rate  ap- 
proaching 100  percent,  it  does  not  take  much  medical  persuading  to 
convince  that  patient  to  substantially  alter  his  behavior,  but  I 
would  further  submit  that  to  think  that  any  individual  is  going  to 
totally  deny  his  sexuality,  a  basic  human  function,  is  naive  and  ex- 
treme. 

Gay  men  will  continue  to  have  sexual  contacts.  They  will  contin- 
ue, even  though  they  know  the  risk  that  they  are  placing  them- 
selves at;  they  will  continue  to  be  human. 

For  us  to  suspect  that  they  will  cease  to  be  human  is  naive. 

At  this  time  1  year  ago,  there  were  300  cases  of  AIDS  in  the 
United  States.  We  now  have  300  cases  of  AIDS  in  San  Francisco 
alone. 

By  the  time  the  current  administration  finishes  its  term  of  office 
iy2  years  from  now,  there  will  be  12,800  cases  of  AIDS  in  this  coun- 
try, and,  as  I  have  told  you,  80  percent  at  least  of  those  patients 
will  die. 

No  one  who  has  acquired  Pneumocystis  pneumonia  has  survived 
for  more  than  2  years. 

Those  brave  young  men  that  you  saw  testify  are  looking  to  you 
to  help  us  to  come  up  with  treatments  to  try  to  prolong  their  lives, 
but  at  the  present  time  no  one  with  Pneumocystis  has  lived  for 
more  than  2  years  after  that  diagnosis  was  made. 

If  nothing  is  done  by  the  time  the  next  administration  finishes 
its  term  of  office,  there  may  be  as  many  as  3,300,000  cases  of  this 
disease  in  the  land. 

I  spoke  of  the  epidemic  of  fear.  In  San  Francisco,  we  now  have 
the  hysteria  of  policemen  unwilling  to  go  into  certain  areas  with- 
out wearing  masks,  the  ridiculous  situation  where  a  bus  operator 
refused  to  take  a  transfer  from  someone  he  assumed  might  be  gay, 
because  he  was  afraid  he  would  acquire  the  disease. 


100 

Clearly,  we  are  failing  in  public  education.  The  incredible  situa- 
tion where  nurses  are  refusing  to  care  for  dying  patients  because 
they  don't  understand  enough  about  the  disease,  and  they  are  fear- 
ful of  acquiring  the  disease,  themselves. 

We  are  failing  in  educating  our  medical  community  as  well  as 
the  entire  citizenry;  and  then  we  had  a  situation  last  week  where 
young  men  were  running  through  the  streets  of  Seattle  with  ball 
bats,  beating  up  on  people  who  they  think  might  be  spreading  a 
disease.  These  self-appointed  public  health  officials  out  there 
spreading  fear  and  anger,  why?  Because  they  are  hearing  this  fear 
and  anger  from  their  parents  and  their  peers,  and  it  is  our  job  to 
try  to  dispel  some  of  that,  and  we  can  only  do  it  with  coordinated 
education  at  the  highest  levels. 

As  a  second  point,  I  suggested  that  you  have  been  misled;  that 
we  have  all  been  misled. 

We  heard  a  moment  ago  that  the  Government  had  only  recently 
become  aware  of  this  problem. 

I  was  invited  to  attend  the  first  meeting  held  at  Bethesda,  Na- 
tional Institutes  of  Health,  in  the  fall  of  1981. 

Everyone  attending  those  meetings  knew  at  that  time  what  we 
were  facing.  We  knew  the  type  of  disease  we  thought  this  was,  a 
transmissible  agent,  probably  blood-borne. 

We  knew  that  the  numbers  were  doubling  at  an  incredible  rate. 
We  were  terrified  of  the  implications  of  this  epidemic.  We  were  at 
that  time  able  to  draw  an  epidemic  coverage. 

By  May  1982,  we  were  predicting  300  cases  by  the  end  of  1982, 
And  the  prediction  of  that  upsweep  was  perfectly  correct.  We  were 
just  naive  in  terms  of  the  numbers.  There  were  not  300  cases  by 
the  end  of  1982,  there  were  900  cases. 

The  delay  in  funding  research  has  been  unconscionable  and  has 
resulted  in  loss  of  lives.  As  a  medical  researcher  I  can  tell  you  that 
we  have  lost  much  valuable  information.  Individuals  who  we  could 
have  questioned  epidemiologically  about  who  they  had  contact  with 
are  now  dead.  There  is  no  way  to  do  retrospective  epidemiology  on 
individuals  who  have  died.  By  losing  them  we  are  losing  informa- 
tion vital  to  understanding  how  this  disease  is  transmitted. 

We  know  there  are  not  enough  projects  yet  being  submitted  by 
researchers  across  the  country.  And  yet  from  our  own  institution, 
the  full  grant  that  we  submitted  was  not  fully  funded.  Many  por- 
tions were  completely  approved.  It  went  through  the  peer  review 
process  and  we  were  told  yes,  indeed,  this  appears  to  be  good  work 
but  there  is  not  enough  money  to  fund  it. 

It  would  seem  that  the  NIH  does  not  have  the  money  to  fully 
fund  all  of  the  projects  that  have  already  been  submitted,  many  of 
which  are  necessary  and  worthy. 

And  I  would  suggest  that  there  is  a  double  accounting  process 
going  on.  In  terms  that  we  have  received  in  response  to  inquiries  to 
the  National  Institutes  of  Health,  we  have  been  told  that  large 
amounts  of  money  are  being  used  to  study  and  investigate  the 
AIDS  epidemic.  And  yet  when  we  look  at  this,  we  find  that  these 
were  moneys  appropriated  to  study  cancer,  clearly  appropriate 
studies  that  should  go  forward,  but  that  were  appropriated  4  and  6 
years  ago.  But  they  are  now  being  lumped  into  the  accounting  for 
the  moneys  being  spent  for  AIDS,  deceiving,  if  you  will,  those  read- 


101 

ing  it  into  believing  that  this  large  amount  of  money  is  being  spent 
on  AIDS,  when  in  fact  there  is  nothing  more  than  moneys  that  had 
been  there  all  along  for  other  important  research  activities. 

I  would  also  like  to  focus  on  a  misconception  that  we  hear  com- 
monly, that  this  is  a  problem  often  referred  to  similar  to  cancer 
where  we  may  be  in  for  the  long  haul.  Let  me  remind  this  commit- 
tee that  there  are  two  aspects  of  this  disease,  and  I  think  it  is  im- 
portant that  all  of  us  keep  this  clear. 

The  first  aspect  is  that  we  are  dealing  with  a  new  sexually-trans- 
mitted blood-borne  agent,  probably  a  retrovirus,  and  that  we  have 
at  our  disposal  the  intellect,  the  abilities,  the  capabilities  of  isolat- 
ing a  virus,  producing  a  vaccine  and  protecting  a  population  not 
yet  exposed  who  are  at  risk. 

The  second  component  of  the  disease  is  that  in  some  way  this 
agent  mysteriously  cuts  off  the  immune  system  of  its  victims  and 
places  them  at  great  risk  for  developing  some  opportunistic  infec- 
tion, such  as  Pneumocystis  pneumonia,  or  Kaposi's  sarcoma. 

While  it  may  take  many,  many  years  to  unravel  all  of  the  im- 
munological complications  of  the  disease,  and  by  the  time  we  have 
a  vaccine  we  may  have  hundreds  of  thousands  of  people  who  have 
AIDS,  who  need  that  research  to  save  their  lives.  Funds  applied 
today  to  look  for  the  agent  may  in  fact  break  this  chain  of  trans- 
mission. But  the  job  is  not  easy.  The  incubation  period  of  this  dis- 
ease is  18  months.  So  if  I  put  a  vaccine  in  front  of  you  today  and 
we  began  to  vaccinate  individuals,  that  would  have  no  impact  on 
the  incidence  of  this  disease  at  all  until  1985. 

Said  another  way,  every  case  that  is  going  to  appear  next  year  is 
already  in  the  pipeline,  and  we  have  no  way  of  stopping  it. 

Namely,  let  me  suggest  some  things  at  least  from  our  perspective 
that  could  be  done  immediately  and  indeed  must  be  done  if  we  are 
going  to  prevent  this  disaster. 

First,  new  Federal  funds  need  to  be  committed  to  attack  specifi- 
cally this  problem.  Throughout  this  epidemic,  some  funds  have 
been  shifted  from  one  agency  over  to  another,  a  little  bit  of  money 
has  been  found  here,  a  small  amount  of  money  has  been  found 
there.  The  amounts  of  money  for  the  type  of  problem  we  have  here 
is  just  not  adequate. 

I  would  suggest  that  you  gentlemen  view  this  like  a  national  dis- 
aster, and  if  this  city  were  devastated  by  a  hurricane  tomorrow, 
you  certainly  would  not  say,  well,  the  sewage  department  is  still 
working,  the  light  departments  are  out  there  working,  we  are  going 
to  get  the  problem  taken  care  of.  The  city  would  have  been  struck 
by  a  new  disaster.  And  it  takes  new  resources  to  deal  with  that  dis- 
aster. 

This  country  has  been  struck  by  a  new  disaster.  None  of  us  ex- 
pected a  new  infectious  disease  to  appear  at  the  end  of  the  20th 
century  which  has  a  mortality  rate  greater  than  smallpox.  We 
need  new  extensive  funding  to  attack  the  problem. 

The  second  is  that  all  of  the  worthy  grants  that  have  been  re- 
viewed should  be  fully  funded  immediately,  so  that  researchers  can 
go  to  work  to  try  to  elucidate  what  the  causative  agent  is  and  how 
it  cuts  off  the  immune  system  of  its  victims. 

The  next  thing  is  that  the  NIH  should  solicit  grants  frequently 
from  the  research  community.  There  should  be  every  3  to  4  months 


102 

calls  for  new  research  papers  to  stimulate  thought  in  the  medical 
community  and  to  continue  to  have  new  grants  to  review. 

The  problem  is  changing  rapidly.  We  need  new  information  rap- 
idly. 

We  need  a  task  force  in  the  executive  branch  of  Government  to 
attempt  to  coordinate  the  educational  activities,  the  physician  edu- 
cation activities,  the  community  ne«^:'S  that  you  had  eloquently  ex- 
pressed by  the  panel  that  preceded  me. 

And  finally,  and  probably  the  most  important  from  the  perspec- 
tive of  a  medical  researcher,  is  we  need  an  ad  hoc  peer  review  com- 
mittee, probably  under  the  National  Institutes  of  Health,  which 
can  expedite  the  peer  review  process. 

As  a  scientist,  I  can  tell  you  that  the  peer  review  process  is  time- 
honored  and  worthy,  and  should  not  be  tampered  with  except  in 
the  case  of  a  national  emergency.  We  have  such  an  emergency 
today.  Eminent  scientists  could  be  picked,  they  could  review  proj- 
ects, and  they  could  recommend  funding  immediately. 

If  the  Jonas  Salk  of  this  epidemic  were  to  appear  today  with  a 
proposal  that  all  of  us  felt  was  worthy,  it  would  take  him  18 
months  to  2  years  to  get  his  first  test  tube  paid  for. 

For  those  of  us  from  the  west  coast,  we  don't  get  back  to  Wash- 
ington very  often.  I  was  lucky  enough  to  arrive  2  days  ago,  park 
and  walk  up  the  Mall,  look  at  some  of  the  national  monuments 
that  we  don't  get  to  see,  and  walked  into  the  National  Archives 
Building  to  see  the  Declaration  of  Independence.  And  one  is  struck 
that  207  years  ago,  when  Jefferson  penned  that  document,  he  said 
that  we  as  citizens  had  three  inalienable  rights,  and  I  don't  think  it 
is  by  accident  that  he  said  that  the  first  of  those  was  life.  And  he 
pointed  out  that  to  secure  those  rights,  governments  are  instituted 
among  men.  And  as  I  read  that,  it  was  his  interpretation  that  the 
purpose  of  government,  the  mandate  of  government  is  to  insure  the 
life  and  lives  of  its  citizens. 

We  are  in  the  beginning,  not  the  midst — we  are  in  the  beginning 
of  a  national  and  indeed  worldwide  epidemic  that  is  going  to 
threaten  the  lives  of  hundreds  of  thousands  of  individuals.  It  would 
seem  clear  that  the  mandate  of  this  Government  is  to  respond  and 
to  respond  immediately. 

Thank  you,  Mr.  Chairman. 

Mr.  Weiss.  Thank  you. 

[The  prepared  statement  of  Dr.  Conant  follows:] 


103 


My  name  xs  Marcus  A.  Conant.  I  am  a  physician  at  the  University 
o-f  California  at  San  Francisco  and  the  co-director  o-f  its  taposi 
sarcoma  Clinic.  I  msh  to  thank  Representative  Weiss  -for  calling  this 
hear  i  ng. 

some  time  three  or  four  years  ago.  in  a  manner  that  will  probably 
forever  remain  unknown,  a  new  and  terrifying  illness  was  introduced 

copulation.  At  first,  we  did  not  even  know  that  it  had 


into  the  human  popt 
arrived.  Instead,  it  was  thought  that  for  some  bizarre  reason  there  was 
an  epidemic  of  a  rare  skin  cancer  called  kaposi  Sarcoma  among 
homosexual  men  in  a  few  large  cities.  At  about  the  same  time,  it  was 
also  noted  that  others  in  the  sa^me  population  group  were  comma  do^.n 
with  a  lethal  form  of  pneumonia  in  unusually  large  numbers.  It  was  not 
until  several  months  later  that  public  health  officials  realized  th.^t 
the  Illnesses  they  were  seeing  were  actually  only  the  symptoms  of  .> 
much  more  fearsome  disease,  the  phenomenon  we  have  come  to  call 
Acqu.red  Immune  Deficiency  Syndrome.  AIDS  has  since  become  America's 
most  feared  acronym.  The  statistics  on  its  proliferation  have  become 
numbing,  but  they  bear  repeating  here.  Last  year,  there  were  a  few 
hundred  persons  with  AIDS.  Now  there  are  1.300.  The  numbe."  o-  AIDS 
victims  currently  doubles  every  si.  months,  and  by  the  end  of  the  year, 
more  than  3,000  people  will  have  it.  As  the  number  of  persons  with  AIDC 
grows,  the  growth  rate  of  the  disease  itself  also  increases,  with  the 
AIDS  population  expected  to  be  doubling  first  every  four  months,  and 
then  every  two.  The  number  of  people  with  AIDS  could  easily  reach  t^e 
tens  of  thousands  in  the  very  near  future.  Because  the  incubation 
period  for  AIDS  is  so  long-  we  believe  it  to  be  IB  months-  even  if  . 


-1- 


104 


vaccine  were  -found  today,  the  number  of  victims  would  continue  to  grow 
until  at  least  1985.  The  final  statistic  in  this  grim  litany  is  that 
nearly  60  percent  of  the  people  who  contract  ftlDS  die  from  it.  The 
disease,  quite  simply,  is  the  most  lethal  infectiuous  killer  known  to 
modern  medicine,  and  it  is  on  a.  rampage  in  this  country. 

In  the  face  of  this  appalling  specter,  one  would  expect  the 
government  of  the  United  States,  the  world's  most  affluent  and 
technically  advanced  nation,  to  be  sparing  no  resource  in  its  fight  to 
stop  AIDS.  But  as  a  physician  and  res-B^rcher    who  has  worked  with  this 
problem  from  the  beginning,  I  have  to  characterize  the  federal 
response  to  AIDC  as  bordering  on  the  negligent.  I  see  in  my  office 
every  day  young  men  who  shiould  be  in  the  prime  of  life  but  iiho  instead 
are  wasting  away  towards  an  early,  pointless  but  once-preventable 
death.  They  regularly  ask  me  why  theii-  own  government  does  not  seem  to 
C3.re    if  they  live  or  die.  The  question  is  not  a  rhetorical  one.  I  ha'.e 
no  answer  for  it 

I  would  like  in  my  testimony  to  explain  briefly  how  the  federal 
response  has  been  inadequate,  and  then  to  propose  what  I  think  we  as  a 
nation  should  be  doing. 

Recently,  the  administration  announced  that  conquering  AIDS  is, 
in  the  words  of  the  Secretary  of  Health  and  Welfare,  the  nation's 
number  one  health  priority.  We  welcome  this  verbal  support,  especially 
after  such  a  long  period  of  official  silence.  However,  I  wish  it  was 
'(>eing  backed  up  with  financial  support  as  well.  The  record  clearly 
shows  that  it  is  not. 

-2- 


105 


We  o-ften  hear  that  •from  the  National  Institute  of  Health  that  it 
has  all  of  the  money  it  needs  to  deal  with  AIDS.  However,  my  every 
experience  with  AIDS  contradicts  that.  I  can,  witfi  no  effort  at  all, 
think  of  two  dozen  research  projects  that  could  be  crucial  to  the  fight 
against  AIDS  that  aren't  being  carried  out  for  the  simple  lad  of  grant 
money.  I  I  now  of  any  number  of  colleagues  who,  instead  of  staying  in 
their  laboratories  doing  vital  research,  have  to  spend  their  time 
chasing  funds.  Compared  to  the  enormity  of  the  problem,  the  federal 
funding  response  has  been,  relatively  speaking,  a  pittance.  The  failure 
of  the  federal  government  and  the  NIH  to  respond  pr'omptly  and 
forcefully  to  this  crisis  is  a  tiational  disgrace.  It  has  helpt^d  the 
spread  of  two  epidemics,  one  of  a  deadly  disease,  the  other  of  public 
hysteria.   I  cannot  help  but  conclude  that  federal  officials  who  say 
that  enough  money  is  being  spent  on  AIDS  are    simply  mouthing  seme 
required  political  line  that  has  nothing  to  do  with  reality.  I  wish 
they  could  be  with  me  in  my  off  ice. every  day  as  I  have  to  face  yet 
another  patient  who  will  likely  die  because  a  major  federal  commitment 
to  fighting  AIDS  was  not  made  sooner. 

I  would  also  question  whether  the  federal  government  has  actually 
committed  as  much  money  to  this  fight  as  it  says  it  has.  1  believe  that 
the  NIH  has  been  less  that  candid  in  describing  the  amount  it  is 
spending  on  AIDS.  For  e;:ample.  the  NIH  includes  in  its  figures  monies 
it  was  spending  on  projects  that  have  nothing  di-ectly  to  do  with  AIDS; 
projects  that  wej-e  underway  before  the  AIDS  epidemic  even  began.  I  also 
know  that  the  National  Cancer  Institute  has  not  released  some  of  the 


106 


monies  lor    research  projects  that  it  has  already  approved  through  its 
laborious  peer  review  process.  It  is  almost  as  though  dubious 
accounting  methods  are  being  used  to  inflate  the  -federal  government's 
purported  AIDS  budget  in  order  to  create  the  appearance  of  a  major 
effort  being  undertaken,  when  in  fact  that  is  not  the  case. 

The  United  States  can  be  proud  that  its  research  establishment  is 
the  ablest  in  the  world.  It  stands  ready  to  be  unleashed  against  AIDS? 
all  that  is  needed  is  the  backing  of  the  federal  government.  The 
tremendous  intellectual  resources  of  the  public  sector,  including 
private  industries  and  the  universities  of  America,  must  be  utilized 
in  solving  this  problem.  This  can  only  be  accomplished  if  Congress 
appropriates  enough  money  to  stimulate  research  outside  of  the  MIH  anJ 
the  Center  for  Disease  Control.  I  am  sure  we  all  have  different 
opinions  about  how  active  the  federal  government  should  be  in  matter-:; 
of  social  welfare.  But  no  matter  what  your  notion  of  the  proper  federal 
role  is,  it  has  to  include  taking  the  lead  in  a  fight  against  a  disease 
that  has  struck  citizens  in  every  state  of  the  union;  a  fiqht  that  onlv 
the  federal  government  has  the  resources  to  undertake. 

There  is  one  point  I  would  like  to  address  here  briefly  before 
moving  on.  Most  of  my  patients  with  AIDS  ars    gay,  and  almost  to  a  man. 
they  tell  me  that  they  believe  the  federal  government  would  have  acted 
against  AIDS  with  a  vengeance  had  it  only  struck  a  segnient  of  the 
population  that  was  in  better  standing  at  the  moment  in  the  nation- s 
capitol.  While  gay  men  are    by  no  means  the  only  persons  afflicted  by 
AIDS,  it  is  clear  they  have  suffered  from  it  more  than  any  other  group. 
I  personally  find  it  hard  to  believe  that  any  member  of  Congress  would 

-4- 


107 


deny  -funds  -for  research  into  an  disease  because  they  did  not  approve  of 
certain  aspects  o-f  the  li-festyles  o-f  most  o-f  the  people  contracting  it. 
AIDS  is  a  medical  problem,  and  questions  o-f  the  legitimacy  or 
illegitimacy  o-f  the  modern  gay  movement  must  be  le-ft  to  some  other 
-forum.  But  i-f  anyone  is  reluctant  to  -fund  the  -fight  against  AIDS 
because  most  of  its  victims  happen  to  be  gay,  let  me  lead  them  to  the 
crib  of  a  newborn  child  who  has  AIDS,  so  they  can  watch  as  the  infant 
screams  with  pain.  There  alone  they  will  find  reason  enough  to  want  to 
halt  this  killer. 

One  misconception  frequently  heard  from  funding  agencies  is  that 
AIDS  is  such  a  complex,  enigmatic  pathological  phenomenon  that 
providing  funds  for  research  would  be  lite  throwing  money  dovjn  a 
bottomless  hole.  The  analogy  is  sometimes  drawn  to  cancer,  where  a 
final  cure  is  probably  still  many  ypars  away.  This  is  a  grievousl'/ 
mistaken  assumption,  which  if  not  corrected,  could  spell  the  deaths  o  "^ 
tens  of  thousands  of  Americans. 


AIDS  is  a  baffling  medical  mystery.  But  it  is  a  sgl.yeabl_e  medical 
mystery.  AIDS  is  a  new  infectiuous  disease  agent,  and  all  asailable 
evidence  indicates  that  it  is  some  form  of  virus.  Fortunately,  at  this 
point  in  the  twentieth  century,   (thanks  in  no  small  part  to  the 
support  for  scientific  research  provided  in  the  pi<st  by  tne  Congress) 
we  have  the  Inowledge  and  tools  at  our  disposal  to  isolate  a  virus.  We 
can  then  proceed  to  sequence  the  genetic  ihforniation  in  the  virus;  to 
produce  a  vaccine  that  will  protect  people  from  acqui''ing  the  virus 
without  incurring  the  disease;  to  clone  that  genetic  material;  and  to 


108 


then  produce  large  amounts  o-f  the  vaccine  -for  public  distribution.  We 
are  hope-ful  that,  given  the  proper  support,  we  can  accomplish  all  o-f 
this  reasonably  quickly,  and  thus  break  the  chain  o-f  transiTii  ssi  on  of 
this  disease. 

But  even  with  that  achieved,  there  would  remain  another  enormous 
medical  and  social  problem  connected  with  AIDS.  By  the  time  a  vaccine 
is  developed,  there  will  likely  be  tens  or  hundreds  of  thousands  of 
persons  already  afflicted  with  AIDS.  In  those  cases,  a  vaccine  would  he 
useless,  since  the  virus  is  already  present  in  their  bodies  and 
wreaking  havoc  with  their  immune  systen.s.  We  therefor  need  to  continue, 
at  fever  pitch,  research  into  the  e>:act  mechanism  by  which  AIDE  does 
its  work.  This  is  so  we  can  save  the  lives  of  those  already  with  tht 
disease,  and  the  many  more  we  know  will  be  contracting  it  before  thcf 
vaccine  is  available. 

These,  then,  are    the  two  ultimate  goals  of  AIDS  research — 
creating  a  vaccine  for  the  well  and  finding  a  course  of  treatment  for 
the  ill.  How  do  we  accomplish  all  of  this? 

I  would  like  to  put  forward  the  proposal  that  AIDS  is  such  an 
unparalled  threat  to  the  American  people  that  an  emergency  task  force 
be  created  at  the  very  highest  level  of  government.  The  task  force 
would  be  headed  by  an  emergency  coordinator  whose  job  it  would  be  to 
act  as  steward  while  we,  as  a  nation,  join  together  to  fight  this 
threat.  The  group  would  report  directly  to  the  President  or  to  the 
Secretary  of  Health  and  Welfare. 


109 


There  are    dedicated  men  and  women  throughout  the  country  mating 
heroic  efforts  every  day  to  solve  the  AIDS  mystery.  I  have  nothing  but 
respect  -for  my  research  colleagues  at  the  NIH  and  the  CDC.  Without 
them,  we  would  be  crippled  in  this  effort.  But  the  work  of  those 
scientists,  along  with  those  at  research  centers  throughout  the 
country,  is  not  being  coordinated;  it  is  as  though  they  are  along  the 
rim  of  a  wheel  that  has  no  center.  A  tasl  force  would  be  that  center 
of  the  wheel.  This  is  not  some  symbolic  action  or  hollow  public 
relations  gesture,  but  a  desparate  need.  Today,  with  no  one  group 
overseeing  the  entire  AIDS  effort,  it  is  easy  for  research  to  be 
duplicated;  for  vital  scientific  findings  not  to  be  passed  along  to 
those  needing  them;  for  researchers  in  one  part  of  the  country  to 
pursue  leads  already  discredited  somewhere  else.  As  you  can  well  guess, 
any  of  those  scenarios  can  be  deadly  in  such  a  time  of  crisis.  Equally 
deadly  is  the  busi ness-as-usual  attitude  of  federal  health  officials  in 
the  timetables  they  use  to  approve  funds  for  research  studies.  We 
desperately  need  to  e;;pedite  the  funding  of  worthy  projects.  If  the 
Jonas  Salk  of  AIDS  were  to  come  to  Washington  today  with  a  research 
proposal,  he  would  probably  be  told  to  come  back  in  two  years  after  his 
papers  had  been  reviewed. 

The  National  Conference  of  Mayors,  at  its  recent  annual 
conference,  passed  a  resolution  asl;ing  the  Congress  to  appropriate  $50 
million  a  year  to  combat  the  AIDS  threat.  I  think:  that  is  an  acceptable 
minimum  amount.  In  considering  the  question  of  funding,  the  Congress 
must  understand  that  AIDS  is  a  new  disease  being  visited  on  the 
population,  and  therefor  new  monies  must  be  made  available  to  deal  with 


-7- 


26-097  O— 83 8 


no 


it.  Some  have  suggested  that  AIDS  research  be  funded  by  diverting  money 
•from  other  public  health  projects.  But  it  makes  no  more  sense  to  do 
that  than  it  does  to  find  the  money  -for  Social  Security  payments  for  a 
new  retiree  by  cutting  off  payments  to  someone  already  in  the  system. 
The  public  health  concerns  towards  which  those  earlier  funds  were 
appropriated  &re    still  with  us  even  with  ftlDS,  and  they  deserve 
continued  federal  support.  As  a  researcher.  I  would  also  wish  to  point 
out  that  it  would  be  extremely  shortsighted  to  fund  AIDS  by  cutting 
money  that  was  earmarked  for  other,  more  basic,  research.  We  iMOuld  be 
helpless  in  the  fight  against  AIDS —  or  in  any  othei-  battle  in 
medicine--  had  it  not  been  for  the  basic  research  done  in  years  past. 
Continuing  that  research  is  part  of  our  commitment  to  the  future. 

I  would  lite  to  make  one  additional  observation  about  money.  I 
thini;  it  demeans  this  body  to  suggest  that  it  would  only  male  a 
judgE'ment  on  n.atters  of  life  and  death  because  of  economics.  The  naiii 
reason  we  must  vanquish  AIDS  is  because  it  is  the  only  moral  choice 
presented  to  us.  E'ut  should  anyone  need  further  persuading,  conside'' 
the  simple  dollars  and  cents  of  the  matter.  It  now  costs  about  *70,000 
to  provide  care  for  a  patient  with  AIDS.  Thousands  have,  ar    will  get, 
the  disease.  Simple  multiplication  makes  it  clear  that  it  is  cheaper 
for  us  to  cure  AIDS  than  to  treat  it. 

I  have  already  spelled  out  the  ultimate  goals  of  AIDS  research, 
and  asked  you  to  commit  federal  resources  to  help  us  achieve  those 
goals.  But  there  Are    a  number  of  other  steps  we  must  tale  in  the 
inter  1 m. 


-B- 


Ill 


«)  While  everything  possible  must  be  done  to  disseminate 
information  about  AIDS  to  all  interested  researchers,  this  must  be 
done  in  such  a  way  that  patient  confidentiality  is  preserved  at  the 
same  time.  Growing  millions  of  Americans  are  completely  comfortable 
with  their  homosexuality  and  do  not  regard  i t  as  any  source  of 
embarrasment.  But  there  are,  of  course,  many  others  who  are  unwilling 
to  be  publicly  identified  as  being  gay.  As  a  result,  a  firm  federal 
policy  on  patient  confidentiality  would  be  a  boon  to  research,  since 
it  would  male  closeted  homosexuals  much  more  willing  to  fully  and 
candidly  discuss  their  AIDS  problems  and  related  issues  with  their 
doctors.  Such  a  policy  would  also  respect  the  right  to  privacy  that 
every  American  cherishes. 

«)  We  need  to  greatly  expand  the  extramural  research  being  done 
into  the  epidemiology  of  AIDS.  The  disease  baffles  us  on  a  number  of 
fronts,  not  the  least  of  which  is  the  networks  by  wh^ch  it  is 
transmitted.  Some  examples  of  the  questions  we  would  lite  answered-  Pan 
Francisco  has  a  very  large  Asian  population,  yet  there  sre    only  four 
Asian-Americans  there  with  AIDS,  while  most  other  ethnic  groups  have 
the  illness  in  proportion  to  their  percentage  of  the  population.  Why  i£ 
this  so?  In  the  first  sets  of  studies  on  AIDS  patients,  they  were 
revealed  frequently  to  be  highly  promiscuous  gay  men.  This  is  not  ai 
all  the  case  today.  Why  the  change?  Among  the  Hatian  males  who  have 
AIDS,  nearly  100  have  described  themselves  as  hetrosexual s.  How  did 
the  disease  spread  to  them?  The  questions  go  on  and  on. 

*)  Fundings  for  research  proposals  are  generally  reviewed  through 

-9- 


112 


the  peer  review  process  of  the  National  Institute  o-f  Health.  This  is  a 
time-honored  procedure,  and  one  that  all  scientists,  including  myself, 
regard  as  the  very  cornerstone  of  our  work.  Truth  flourishes  and 
science  advances  only  in  an  atmosphere  of  skepticism,  questioning  and 
caution.  I  think  we  must  also  remember,  though,  that  we  are    in  the 
middle  of  a  public  health  emergency  unlike  any  other  of  our 
generation,  and  that,  as  I  indicated  earlier,  the  slow,  deliberative 
evaluations  that  in  less  critical  times  are    the  lifeblood  of  research 
could,  in  this  instance,  quite  literally  spell  the  death  of  untold 
thousands  of  Americans.  In  the  average  case,  the  time  that  elapses 
between  a  proposal  being  put  before  the  NIH  and  the  funds  for  the 
project  being  released  is  18  months  to  two  years.  As  I  think  you  car. 
appreciate,  that  is  close  to  an  eternity  when  it  comes  to  the  current 
AIDS  crisis.  The  NIH  needs  to  very  quickly  establish  an  ad  hoc  review 
committee  made  up  of  able,  dedicated  e:;perts  who  can  review  propcsals 
for  AIDS  research  on  an  emergency  basis.  These  scientists  would  bring 
with  them  both  their  e;;pertise  as  researchers  as  well  as  their 
recognition  that  a  grave  public  health  crisis  exists  that  demands 
prompt  action. 

♦)  I  also  think  it  is  important  for  the  NIH  to  issue  a  general 
call  for  research  proposals  dealing  with  AIDS.  This  would  send  a 
signal  from  the  federal  government  to  the  scientific  community  that  it 
is  genuinely  serious  about  AIDS.  I  know  of  a  number  of  able  scientists 
who  currently  will  not  even  bother  spending  the  time  putting  together 
an  AIDS-related  proposal  because  they  feel  it  will  not  be  seriously 
considering  by  the  authorities  in  Washington. 


-10- 


113 


♦>  Every  American  has  an  interest  in  seeing  to  it  that  the 
nation's  blood  supply  is  protected.  Efforts  must  be  made  to  develop  a 
reliable,  scientific  method  of  screening  that  supply  for  infectiuous 
agents  such  as  AIDS.  In  recent  months,  as  it  has  become  suspected  that 
AIDS  may  be  transmitted  through  blood  transfusions,  the  vast  majority 
of  gay  men  have  taken  themselves  out  of  the  pool  of  blood  donors  for 
the  duration  of  this  health  emergency.  Most  blood  ban! s  have  also  cut 
back  on  blood  drives  in  gay  neighborhoods.  But  a  policy  of  protecting 
the  blood  supply  by  screening  donors,  rather  than  blood,  is  ultimately 
shortsighted  and  ineffective.  It  is  easy  to  imagine,  for  example,  an 
office  blood  bank  drive  where  a  closeted  gay  man,  and  a  potential  AIDS 
carrier,  wishes  to  "prove"  his  hetrose;:ual  i  ty  to  his  co-workers  by 
going  along  with  the  others  and  donating  blood.  No  amount  of  pre- 
donation  screening  or  questioning  can  prevent  a  person  like  that  from 
donating  blood.  And  a  massive  screening  effort  to  determine  who  is, 
and  who  is  not,  a  homosexual  (or,  for  that  matter,  an  intravenous  drug 
user  or  a  Haitian  or  a  hemophiliac)  is  a  social  policy  that  is,  at 
very  best,  of  questionable  wisdom,  and  at  worst  Orwellian.  As  far  as 
the  nation's  blood  supply  is  concerned,  the  emphasis  must  therefor 
shift  from  the  donor  to  the  blood. 

♦)  There  needs  to  be  increased  federal  support  for  persons 
actually  afflicted  with  AIDS.  The  cost  of  AIDS  treatment  is 
staggering,  and  is  simply  beyond  the  financial  resources  of  most 
Americans.  In  the  case  of  kidney  dialysis,  the  federal  government  long 
^go  realized  that  it  was  not  befitting  a  civilized  nation  for  its 
citizens  to  die  because  they  could  not  afford  the  cost  of  medical 

-11- 


114 


care.  The  situation  is  much  the  same  today  with  AIDS,  and  I  believe 
the  federal  response  should  be  the  same. 

«)  Six  months  ago,  those  of  us  doing  research  into  AIDS  were 
■frightened  by  two  things-  the  disease  itself,  and  the  complete  lack  of 
awareness  of  it  outside  of  the  gay  community.  Now,  we  have  the  opposite 
problem.  There  are,     in  fact,  now  two  AIDS  epidemics:  one  involving 
immunology,  the  other  involving  fear.  There  are  any  number  of  horror 
stories  in  this  regard;  one  of  the  most  appalling  has  to  do  with  a  San 
Francisco  bus  driver  who,  out  of  a  fear  of  contracting  AIDS  from  a 
tattered  slip  of  paper,  refused  to  take  a  bus  transfer  from  a  man  he 
presumed  to  be  a  homosexual.  I  also  hear  too-frequent  reports  of 
hospital  workers  refusing  to  care  for  AIDS  patients.  It  is  a  sad  tims 
indeed  when  members  of  the  healing  professions  no  longer  wish  to  car-? 
for  the  sick. 

I  don't  wish  to  belittle  the  fear'of  AIDS;  no  one  knows  more  tharc 
myself  what  a  truly  fearsome  medical  phenomenon  it  is.  But  I  think 
there  is  a  considerable  public  education  project  ahead  of  us  to  tell 
the  public  who  is,  and  who  is  not,  at  risk.  It  cannot  be  repeated  too 
often  that  there  is  no  evidence  that  AIDS  is  transmitted  through  casual 
social  contact.  Common  sense  alone  would  lead  one  to  that  conclusion. 
If  AIDS  were  easily  transmitted,  then  by  now  millions  of  Aniericans 
would  have  it,  not  1,800,  most  of  whom  3.re    gay  men. 

In  several  ways,  this  fear  of  AIDS  is  a  public  health  problem  in 
its  own  right.  The  health  and  welfare  department's  new  toll-free  phone 


-12- 


115 


line  IS  a  small  step  in  the  right  direction.  <I  would  point  out, 
though,  that  the  phone  lines  are  receiving  up  to  10,000  calls  a  day- 
testimony  indeed  to  the  concerns  Americans  have  about  AIDS.)  There  are 
also  grave  questions  o-f  social  justice  in  this  regard.  I  have  heard 
too  many  stories  o-f  persons  with  AIDS  being  fired  -from  their  jobs  or 
evicted  from  their  homes  once  their  condition  became  known.  There  are 
also  economic  aspects  to  the  AIDS  hysteria.  My  businessmen  friends 
bad  in  San  Francisco  have  started  to  worry  about  the  effect  of  the 
fear  of  AIDS  on  tourism  in  that  city.  They  also  say  that  friends  in 
other  big  cities  have  started  to  echo  the  same  concern.  There  i=  even 
the  worry  that  foreign  tourism  to  the  U.S.  could  begin  to  suffer 
because  of  the  world-wide  attention  given  to  AIDS.  All  of  these  AIDS- 
related  fears  ars,     of  course,  groundless.  A  high-level  task  force  cculr' 
do  much  towards  re-assuring  the  public  of  that  fact. 

*)  The  definition  of  AIDS  must  be  broadened  by  the  Social 
Security  Administration  for  the  purposes  of  providing  benefits. 
Currently,  the  Social  Security  use  the  definition  provided  by  the 
Center  for  Disease  Control,  which  defines  as  AIDS  patients  as  a  person 
under  60  with  either  I  aposi  Sarcoma  or  Pneumocystis  pneumonia,  and  ,=. 
few  other  disease,  [^owever ,  we  have  recently  see  a  number  cf  new 
infectiuous  agents  take  hold  in  AIDS  patients.  These  people  are  just 
as  disabled,  just  as  in  need  of  Social  Security  help,  as  a  person  with 
KS.  Yet  they  are    currently  denied  that  help  because  of  an  outdated 
definition  of  the  problem. 

^,     ♦)  Due  to  the  publicity  AIDS  has  received  in  large  cities  with 
substantial  gay  populations,  most  physicians  and  other  health  care 

-13- 


116 


workers  are  now  -familiar  with  the  clinical  mani -f  estati  ons  of  AIDS,  as 
well  as  the  appropriate  treatment  protocols.  But  this  awareness  of 
AIDS  must  be  spread  to  doctors  all  over  the  country,  so  that  persons 
suffering  from  the  disease  are  diagnosed  correctly,  and  from  the  very 
start  receive  appropriate  medical  care.  This  will  help  save  the  lives 
of  these  patients;  it  will  also  help  curb  the  spread  of  the  disease-. 

In  closing,  I  would  like  to  point  out  that  last  week:  alone,  my 
home  city  of  San  Francisco  buried  four  of  its  sons;  young  men  who  onl/ 
months  ago  were  in  the  prime  of  their  lives.  At  a  time  such  as  this, 
one  can't  help  but  recall  that  it  is  the  right  to  life  that  is 
the  first  of  the  three  unalienable  rights  set  forth  in  our  Declaratior 
of  Ir-idependence;  and  that,  as  Jefferson  wrote  207  years  ago,  that  it  i  r- 
tc  secure  those  rights  that  governments  are    instituted  among  men.  Any 
government  has  no  higher  purpose  than  to  protect  the  lives  of  its 
citizens,  and  the  citizens  of  the  United  States  tooay  face  no  greater 
public  health  threat  than  they  do  from  AIDS.  We  havE  the  profound  moral 
obligation  to  take  every  step  necessary  to  c:onquer  it  as  rapidly  a=  is 
humanly  possible. 

Thank  you. 


117 
Mr.  Weiss.  Dr.  Siegal. 

STATEMENT  OF  DR.  FREDERICK  P,  SIEGAL,  CHIEF,  DIVISION  OF 
CLINICAL  IMMUNOLOGY,  MOUNT  SINAI  SCHOOL  OF  MEDICINE 
AND  CITY  UNIVERSITY  OF  NEW  YORK 

Dr.  Siegal.  Mr.  Chairman,  I  was  asked  to  comment  today  on  the 
response  of  the  Federal  Government  to  the  public  health  emergen- 
cy presented  by  AIDS.  I  realized  when  thinking  about  this  question 
that  by  virtue  of  existing  NIH  support,  that  I  and  many  other  in- 
vestigators like  me  do  in  fact  represent  a  part,  albeit  small,  of  that 
response,  and  that  to  some  extent  my  professional  history  and  cur- 
rent work  exemplifies  some  of  what  the  Federal  Government  can 
do  and  is  doing  about  AIDS. 

From  my  medical  student  days,  through  my  house  staff  training, 
I  learned  in  an  environment  heavily  endowed  one  way  or  another 
by  public  support.  But,  and  this  is  important,  it  was  a  time  in 
which  students  and  trainees  were  actively  encouraged  to  enter  a 
research  career.  The  U.S.  Army  taught  me  practical  public  health 
and  preventive  medicine  and  Federal  funds  made  possible  the  func- 
tioning of  the  immunology  research  laboratories  in  which  I  did  my 
post-doctoral  fellowship. 

Since  1973  I  have  been  engaged  in  clinical  investigation  into  the 
somewhat  arcane  and  certainly  obscure  field  of  immune  deficien- 
cies of  adults,  funded  almost  continuously  out  of  Federal  moneys, 
first  at  Memorial  Sloan-Kettering  Cancer  Center  and  then  Mount 
Sinai  School  of  Medicine. 

It  was  not  an  endeavor  that  could  have  supported  a  private  prac- 
tice. Yet  from  my  relatively  few  patients  with  these  rare  diseases,  I 
was  able  to  have  an  impact  chiefly  because  of  my  special  research 
and  rather  unique  background. 

I  could  not  have  predicted  nor  could  anyone  else  that  that  kind 
of  background  developed  first  in  1970  could  have  had  an  impor- 
tance or  usefulness  to  a  major  public  health  problem  in  1983. 

At  several  other  centers  in  New  York  City,  as  well  as  in  Los  An- 
geles, San  Francisco,  Atlanta,  and  Miami,  physicians  with  similar 
backgrounds  were  also  trying  to  figure  out  obscure  immunodefi- 
ciencies. We  were  doing  this  for  a  variety  of  reasons,  none  of  which 
obviously  had  anything  to  do  with  the  coming  epidemic,  to  help 
those  few  patients,  to  expand  our  own  knowledge  of  those  diseases, 
and  to  improve  through  those  experiments  of  nature  the  under- 
standing of  human  immune  deficiency  infection.  So  we  happened  to 
be  in  the  path  of  AIDS  when  it  appeared  and  we  were  ready  in 
effect  to  deal  with  the  problem. 

Had  the  disease  hit  other  cities  in  the  United  States,  there  are 
federally  trained  and  supported  clinical  investigators  who  could 
also  have  promptly  become  involved. 

But  given  the  present  climate  of  opinion,  we  are  concerned  that 
10  years  from  now  there  won't  be  the  same  kind  of  background 
population  available  to  study  a  similar  epidemic. 

It  might  be  useful  to  look  back  at  the  time  of  the  outbreak  of 
AIDS  and  the  mechanisms  that  we  did  use  to  respond  to  it. 

In  June  1980,  the  first  of  our  cases  appeared  at  Mount  Sinai.  He 
was   then  just  an   unusual   case  of  immune  deficiency,   and   we 


118 

turned  our  NIH-funded  laboratory  to  his  investigation.  Because  he 
had  unremitting  herpes  simplex  infection,  we  turned  for  help  to 
colleagues  at  Memorial  Sloan-Kettering,  who  had  somewhat  differ- 
ent and  specialized  backgrounds. 

Carlos  Lopez,  Ph.  D.,  whose  training  in  herpes  viruses  and  the 
host  defense  was  also  supported  by  Federal  grants,  was  also 
brought  to  bear  on  the  problem  as  were  many  other  investigators. 
Without  realizing  it,  we  had  begun  a  prospective  study  of  AIDS 
with  our  very  first  patient. 

[Article  relating  to  study  follows:] 


119 


%^ 


Vol.  JOS     No.  24 


j^^,/oj9S/ 


ULCERATIVE  HERPES  —  SIEGAL  ET  AL. 


1439 


SEVERE  ACQUIRED  IMMUNODEnCffiNCY  IN  MALE  HOMOSEXUALS,  MANIFESTED  BY 
CHRONIC  PERLiNAL  ULCERATIVE  HERPES  SIMPLEX  LESIONS 

Frederick  P.  Siegal,  M.D.,  Caru)s  Lopez,  Ph.D.,  Glenn  S.  Hammer,  M.D.,  Arthur  E.  Brown,  M.D., 

Stephen  J.  Kornfeld,  M.D,  Jonathan  Gold,  M.D.,  Joseph  Hassett,  M.D.,  Shalom  Z.  Hirschman,  M.D., 

Charlotte  Cunninoham-Rundles,  M.D.,  Ph.D.,  Bernard  R.  Adelsbero,  M.D.,  David  M.  Parham,  M.D., 

Marta  Siegal,  M.A.,  Susanna  Cunningham-Rundles,  Ph.D.,  and  DoN.t.LD  Armstrong,  M.D. 


Abstract  Four  homosexual  men  presented  with 
gradually  enlarging  perianal  ulcers,  from  which  her- 
pes simplex  virus  was  cultured.  Each  patient  had  a 
prolonged  course  characterized  by  weight  loss,  fever, 
and  evidence  of  Infection  by  other  opportunistic  mi- 
croorganisms including  cytomegalovirus,  Pneumo- 
cystis carina,  and  Candida  albicans.  Three  patients 
died;  Kaposi's  sarcoma  developed  in  the  fourth.  All 
were  found  to  have  depressed  cell-mediated  immuni- 


ty, as  evidenced  by  skin  anergy,  lymphopenia,  and 
poor  or  absent  responses  to  plant  lectins  and  anti- 
gens in  vitro.  Natural-i<iller-cell  activity  directed 
against  target  cells  Infected  with  herpes  simplex  virus 
was  depressed  in  all  patients.  The  absence  of  a  histo- 
ry of  recurrent  Infections  or  of  histologic  evidence  of 
lymphoproliferative  or  other  neoplastic  diseases  sug- 
gests that  the  immune  defects  were  acquired.  (N  Engl 
J  Med.  1981;  305:1439-44.) 


CHRONIC  ulcerating  lesions  caused  by  herpes 
simplex  viruses  (HSV)  are  unusual  even  in  pa- 
tients with  severe  immunologic  defects.  These  lesions 
occur  in  advanced  lymphoproliferative  disease,  after 
immunosuppression  for  organ  transplantation,  during 
treatment  with  high  doses  of  corticosteroids,  and  in 
certain  primary  immunodeficiency  disorders.'"*  In 
four  previously  healthy  homosexual  men  we  found 
chronic  perianal  ulcers  infected  with  HSV.  Immuno- 
logic evaluation  confirmed  the  presence  of  apparently 
acquired  cellular  immunodeficiency.  The  course  in 
these  patients  was  characterized  by  severe,  unrelent- 
ing opportunistic  infections,  leading  to  death  in  three 
patients. 

Methods 

8ub|«cts 

The  four  patients  were  referred  to  Mount  Sinai  Hospital  or  to 
Memorial  Hospital  for  diagnosis  or  treatment.  Controls  were  nor- 
mal male  and  female  volunteers  20  to  SO  years  old. 

Immunologic  Studies 

Mononuclear  cells  were  obtained  from  heparinized  venous  blood 
and  characterized  by  cell  markers  as  previously  described.'  Hy- 
bridoma-derived  reagents  defining  Leu-1,  present  on  all  normal 
human  T  lymphocytes,  and  Leu-2a,  characteristic  of  a  suppres- 
sor/cytotoxic  subset,  were  kindly  provided  by  Dr.  Robert  L. 
Evans. '°  Responses  to  phytohemagglutinin,  concanavalin  A,  poke- 
weed  mitogen,  and  alitigens  from  microbial  pathogens  were  meas- 
ured by  cellular  DNA  synthesis."  Natural-killer-cell  function  was 
determined  by  comparing  the  cells*  cytotoxicity  among  uninfected 
**Cr-labeled  human-foreskin  fibroblasts  with  their  cytotoxicity 
among  HSV-infected  fibroblasts."  Delayed  skin  hypersensitivity 
was  tested  with  recall  antigens  that  usually  elictcd  a  respoiue  in 
normal  adults  {Candida  albuans,  streptokinase-streptodomase, 
mumps,  and  tetanus  toxoid).  Immune  complexes  were  detected 
with  a  modification  of  the  Raji-cell  assay  for  Patient  1  '*  and  precip- 
itation with  3.S  per  cent  polyethylene  glycol  for  the  other  three 


From  the  divisions  of  Clinical  Immunology  and  Infectious  Diseases,  the 
Mount  Sinai  Medical  Center,  and  the  Clinical  Immunology  and  Infectious 
'i>iBeases  Services,  Memorial  Sloan-Kettering  Cancer  Center.  New  York. 
Uddrcsj  reprint  requests  to  Dr.  Siegal  at  Mt.  Sinai  Medical  Center.  New 
*iOTk,  NY  10029. 

'  Supponed  in  part  by  granu  (AI-16186  and  CA-08748)  from  the  U.S.  Pub- 
lic Health  Service,  by  the  American  Cancer  Society,  the  Chemotherapy 
Foundation,  and  the  Irma  T.  Hirschl  Charitable  Trust. 


patients."  Specimens  for  viral  culture  were  traruponed  in  Hanks' 
salts  and  incubated  with  a  panel  of  cell  types.  Cytopathic  effects  in 
human  embryonic  kidney  were  observed  within  24  to  48  hours  when 
a  specimen  was  positive  for  HSV.  Commercial  antiserums  were 
used  to  characterize  direct  immunofluorescence  for  HSV  in  biopsy 
specimens. 


Patients 


PaUvnt  1 


A  26-year-old  white  homosexual  man  first  noted  perianal  pain 
and  vesiculation  in  January  1980.  During  the  following  spring,  ul- 
cerations gradually  developed  and  fever  and  weight  loss  began.  At 
presentation  elsewhere  the  patient  was  anemic.  Results  of  marrow 
and  liver  biopsies  were  negative.  Antibiotics  were  administered.  A 
large  perianal  ulcer  had  formed  by  July,  and  hepatosplenomegaly 
and  generalized  lymphadenopathy  were  observed  ivhen  he  was  ad- 
mitted to  Memorial  Hospital.  Cultures  taken  from  the  ulcer  bed  in- 
dicated HSV  Type  2;  sigmoidoscopy  revealed  proctitis  and  an  an- 
terior artal  ulcer.  Chest  x-ray  films  showed  an  infiltrate  of  the  right 
upper  lobe.  Skin  anergy  was  noted.  Further  evaluation  for  suspect- 
ed infiammatory  bowel  disease  or  lymphoma  was  negative.  By  Au- 
gust, the  patient  had  lost  approximately  half  his  origiruU  weight, 
and  fever  and  perianal  ulceration  continued.  Exploratory  laparoto- 
my with  splenectomy  and  biopsies  of  the  Uver,  small  intestine,  and 
lymph  nodes  showed  only  lymphocyte  depletion.  Satellite  ulcers  ap- 
peared on  the  buttocks.  Parenteral  nutritional  supplements,  trans- 
fusions, and  antibiotics  were  given,  but  without  benefit.  In  Octo- 
ber, the  chest  films  were  unchanged.  Persistently  positive  cultures 
for  HSV,  abnormal  liver-function  tests,  and  an  enlarging  ulcer  led 
to  a  trial  of  an  experimental  antiviral  compound  2'-fiuoro,S-iodo- 
aracytosine  (FIAC).  Rectal  bleeding  developed;  colonoscopy  ir- 
vealed  vesicles  and  ulcers,  but  biopsies  were  nondiagnostic  and 
cultures  were  negative  for  HSV  and  other  pathogens.  Human-leu- 
kocyte interferon,  broad-spectrum  antibiotics,  and  trimetho- 
prim-sulfamethoxazole (TMP-SMZ)  were  given  for  increasing 
dyspnea  with  bilateral  pulmonary  infiltrates.  Renal  failure  and  en- 
cephalopathy developed,  and  the  patient  died  in  October. 

Autopsy  revealed  herpetic  proctitis  and  colitis,  with  viral  dissem- 
ination to  the  posterior  colunuis  of  the  spinal  cord.  Pntvmocystis  can- 
mi  was  present  in  the  lungs.  Intranuclear  and  intracytoplasmic  in- 
clusions typical  of  cytomegalovirus  were  present  in  the  adrenals, 
limgs,  colonic  smooth  muscle,  and  endothelium  underlying  the  ul- 
ceratioru.  Electron  microscopy  (kindly  performed  by  Dr.  Robert  A. 
Erlandson)  showed  inclusions  compatible  with  either  HSV  or  cyto- 
megalovirus. 

Patient  2 

A  32-year-old  Hispanic  homosexual  man  had  perianal  vesicular 
lesions  in  July  1979;  biopsy  suggested  cytomegalovirus  infection.  In 
November,  he  began  to  have  fever,  anorexia,  gradual  weight  loss. 


120 


1440 


THE  NEW  ENGLAND  JOURNAL  OF  MEDICINE 


Dec.  10,  1981 


abdominal  pain,  and  hunatochezia.  In  March  1980,  rectal  bleed- 
ing was  severe  enough  to  require  transfusion  of  eight  units  of  blood. 
Ulceration  of  the  perianal  lesion  and  diffuse  lymphadenopathy  were 
noted.  The  cause  of  these  conditions  was  not  revealed  by  sigmoid- 
oscopy, gastrointestinal  barium  studies,  examination  of  stools  for 
bacteria  and  parasites,  abdominal  computerized  tomography,  so- 
nography, or  serologic  studies;  on  the  basis  of  inclusions  found  on 
rectal  biopsy,  which  suggested  lymphogranuloma  venereum,  tetra- 
cycline was  given,  without  effect. 

The  patient  was  tratuferred  to  the  Mount  Sinai  Hospital  in  May 
because  of  continued  fevers  and  cachexia.  He  had  oral  candidiasis, 
generalized  shotty  lymphadenopathy,  and  abdominal  tenderness  in 
the  left  lower  quadrant.  The  perianal  ulcer  had  enlarged  to  12  cm. 
Anemia  and  leukopenia  were  noted.  Culture  and  immunofluores- 
cence testing  of  the  ulcer  showed  only  HSV  Type  2.  Evaluation  for 
lues,  gonorrhea,  lymphogranuloma  venereum,  and  other  patho- 
geiu  was  negative.  A  biopsy  suggested  that  HSV  and  cytomegalo- 
virus coexisted  in  the  ulcer.  Lymph-node  biopsy  indicated  the  ab- 
sence of  germinal  centers.  Treatment  with  vidarabine  for  five  days 
had  no  effect,  nor  did  a  four-day  trial  of  acyclovir  (kindly  provided 
by  Burroughs-Wellcome).  Spiking  fevers,  rectal  bleeding,  progres- 
sive wasting  and  lymphopenia  did  not  respond  to  broad-spectrttm 
antibiotics  and  transfusions.  Terminally,  the  patient  appeared  to 
have  a  generalized  cardiomyopathy;  he  died  on  August  8,  1980. 
Permission  for  autopsy  was  denied. 

Patient  3 

A  28-year-old  Colombian  homosexual  man  reported  dull  pain  in 
the  left  lower  abdominal  quadrant  and  rectal  bleeding  in  May  1 980. 
He  was  treated  surgically  for  presumed  perianal  abscess.  Postoper- 
ative rectal  bleeding  necessitated  transfusions.  In  June  fever  (tem- 
perature to  40°C)  and  weight  loss  began.  After  additional  anal 
surgery,  a  perianal  ulcer  developed  and  gradually  spread.  Tetracy- 
cline and  prednisone  were  given.  However,  unrelenting  fever,  peri- 
anal ulceration,  and  a  12-kg  weight  loss  prompted  an  extensive  but 
unrevealing  evaluation,  which  included  colonoscopy,  gastrointesti- 
nal contrast  studies,  marrow  biopsy,  gallium  and  liver/spleen 
scans,  abdominal  sonography,  and  standard  cultures. 

The  patient  was  transferred  to  the  Mount  Sinai  Hospital  in  Feb- 
ruary 1981  because  of  cachexia  and  a  20-cm  perianal  ulcer  (Fig.  1). 
Repeat  evaluation  for  inflammatory  bowel  disease  and  lymphoma 
included  exploratory  laparotomy  and  construction  of  a  diverting  co- 
lostomy. No  specific  pathologic  prtKess  was  found;  node-biopsy 
specimens  were  normal.  Cultures  of  the  ulcer  grew  HSV  Type  2, 
which  was  conTirmed  by  immunofluorescence  testing  and  typical 
morphologic  appearance.  Vidarabine  was  given  until  ceniral-nerv- 
ous-system  toxicity  developed.  In  April,  the  patient  was  transferred 
to  Memorial  Hospital  for  further  treatment  with  interferon  and 
FIAC;  however,  the  ulcer  did  not  regress  and  cultures  remained 
positive.  Bilateral  interstitial  pneumonitis  and  encephalopathy  led 
to  his  death  in  June. 

At  autopsy,  necrotizing,  hemorrhagic  bronchopneumonia,  hem- 
orrhagic colitis,  and  cholelithiasis  were  found.  Post-mortem  cul- 
tures from  lung,  liver,  spleen,  lymph  nodes,  and  heart  were 
negative,  but  herpetic  intranuclear  inclusions  suggestive  of  cyto- 
megalovirus were  seen  in  the  colon,  adrenals,  stomach,  and  lungs. 

Patient  4 

A  22-year-old  Hispanic  homosexual  man  had  fever  (38.5°C)  and 
night  sweats  in  July  1 980.  Gradual  weight  loss  began.  Oral  candi- 
diasis was  noted  in  September.  By  December,  an  8-kg  weight  loss, 
generalized  lymphadenopathy,  splenomegaly,  anemia,  and  leuko- 
penia were  observed.  Chest  films  showed  an  infiltrate  in  the  right 
upper  lobe.  Evaluation  for  underlying  disease,  including  gastroin- 
testinal roentgenography,  liver  biopsy,  gallium  scanning,  abdomi- 
nal sonography,  and  colonic  and  lymph-node  biopsies,  gave  non- 
specific or  normal  results.  In  January  1981,  perianal  vesicular 
lesions  first  appeared;  cultures  showed  HSV  Type  2.  Spiking  fever, 
lethargy,  anorexia,  and  weight  loss  continued,  and  the  perianal  le- 
sions formed  a  gradually  enlarging  ulcer;  ulcerative  lesions,  from 
which  HSV  was  cultured,  also  appeared  on  the  nasolabial  fold  (Fig. 
2A).  By  April,  the  patient  had  lost  22  kg  and  had  severe  oral  candi- 
diasis. Treatment  with  amphotericin  led  to  some  reduction  in  the 


candidal  infection;  klebsiella  bacteremia  resoWed  with  antibiotict. 
Treatment  with  vidarabine  for  two  weeks  did  not  affect  the  lesioi^ 
or  other  symptoms,  but  in  May  acyclovir  (Burroughs-Wellcom*) 
given  for  10  days  led  to  defervescence  and  gradual  healing  of  the 
ulcers  (Fig.  2B).  The  marked  lymphopenia  and  lymphoid  dysfunc- 
tion that  had  characterized  the  disease  (see  Results)  were  not  al- 
tered. TMP-SMZ  was  given  in  low  doses  to  prevent  pneumocys- 
tosis. In  July,  the  ulcers  recurred  and  HSV  was  again  cultured. 
During  successful  retreatment  with  acyclovir,  bluish  nodules  on  the 
back  and  penile  shaft  were  noted.  On  biopsy,  a  diagnosis  of  Kapo- 
si's sareoma  was  made. 

Results 

Serologic  data  are  summarized  in  Table  1 .  Patient  1 
never  had  detectable  complement-fixing  antibodies 
against  HSV,  Patients  2  and  4  had  unchanging  titers, 
and  Patient  3  had  a  fourfold  increment  in  titer.  Sero- 
logic evidence  of  active  cytomegalovirus  infection  was 
present  only  in  Patient  2.  Patient  4  had  complement- 
fixing  antibody  titers  of  1 .8  and  less  than  1  ;8.  There 
was  no  evidence  of  acute  or  recent  infection  with  vari- 
cella-zoster or  Epstein-Barr  viruses,  lymphogranulo- 
ma venereum,  or  toxoplasmosis.  Antibody  to  hepati- 
tis B  virus  was  present  in  two  patients,  and  hepatitis  B 
surface  antigenemia  developed  late  in  Patient  1.  Other 
serologic  studies,  particularly  in  Patient  1,  failed  to 


Figure  1.  Perianal  Ulceration  of  Patient  3,  before  Therapy 

with  Vidarabine. 

The  appearance  of  the  lesion  did  not  change  during  or  after 

this  treatment. 


121 


Vol.  305     No.  24 


ULCERATIVE  HERPES  —  SIEGAL  ET  AL. 


1441 


Figure  2.  Nasolabial  Lesion  of  Patient  4. 

Panel  A  shows  lesion  (completely  obstructing  both  nares) 

before  therapy  with  acyclovir,  and  Panel  B  shows  healing 

three  days  after  treatment. 


suggest  infection  with  legionella  species,  cryptococco- 
sis, histoplasmosis,  Entamoeba  histolytica,  toxoplas- 
ma, respiratory  'syncytial  viruses,  or  rubeola  virus. 
Serologic  testing  for  syphilis  was  negative  in  all  pa- 
tients. 

Skin  anergy  to  recall  antigens  was  present  in  all 
subjects  (Table  2).  Total  lymphocyte  counts  were  reg- 
ularly depressed.  Except  for  a  single  determination 
(Patient  1,  July  1980),  counts  did  not  exceed  1000  and 
averaged  from  200  to  600.  The  severe  lymphopenia 
limited  the  studies  that  could  be  done.  The  propor- 
tion of  cells  with  T-cell  characteristics  ranged  from 
normal  to  depressed  in  various  determinations.  The 

firoportion  of  sheep  rosettes  tended  to  be  lower  than 
he  proportion  of  cells  demonstrable  with  use  of  hy- 
oridoma-derived  antibodies  to  T  cells  (anti-Leu-1). 
Although  this  finding  suggests  that  a  serum  inhibitor 
of  rosette  formation  was  present,  none  was  found  in 
Patients  3  or  4.  The  proportion  of  T  cells  exhibiting  a 


suppressor/cytotoxic  cell  phenotypc  (Leu-2a)  was  in- 
creased in  Patient  3  but  not  in  Patients  2  or  4.  Lym- 
phocyte responses  to  plant  lectins  were  moderately  di- 
minished in  Patient  1,  more  severely  so  in  Patients  2 
and  3,  and  progressively  depressed  in  Patient  4.  Only 
Patient  4  had  a  response  to  phytohemagglutinin  that 
was  within  the  normal  range  when  he  was  first  stud- 
ied. Responses  to  pokeweed  mitogen  were  relatively 
preserved.  In  Patient  1,  despite  only  moderate  de- 
pression of  mitogen-induced  proliferation,  transfor- 
mation responses  to  all  antigens  tested,  including 
HSV  and  cytomegalovirus,  were  absent. 

Measurements  of  serum  immunoglobulin  and  Im- 
munoelectrophoresis indicated  polyclonal  hyperim- 
munoglobulinemia,  particularly  of  IgA.  Despite  this 
finding,  serum  antibody  titers  were  generally  low.  The 
proportions  of  B  cells  were  normal  in  all  subjects.  Ab- 
solute numbers  of  B  cells,  as  well  as  of  T  cells,  were 
depressed. 

We  considered  the  results  of  the  assay  of  natural- 
killer-cell  function  in  two  ways.  (  7)  HSV-specific  nat- 
ural-killer activity  in  lytic  units  per  million  mono- 
nuclear cells  was  determined  directly  from  the  lytic 
system.  The  calculation,  which  is  based  on  a  range  of 
ratios  of  killer  cells  to  target  cells,  considers  all  cells 
isolated  from  blood."  According  to  this  standard,  nat- 
ural-killer activity  was  normal  in  Patients  1  and  4;  it 
was  initially  very  depressed,  in  Patient  3,  but  later 
gradually  became  normal.  (2)  Because  of  the  severe 
deficiency  of  mononuclear  cells,  calculation  of  the 
lytic  units  per  milliliter  of  blood,  based  on  cell  yields, 
was  also  made  (Table  2).  By  this  criterion,  all  sub- 
jects had  severely  depressed  natural-killer  function; 
Patient  2  had  no  measurable  activity. 

Discussion 

Ulcerative  lesions  caused  by  HSV  are  usually  ob- 
served only  in  patients  with  severe  deficits  of  cellular 
immunity  associated  with  another  underlying  dis- 
ease.'"' That  four  patients  who  were  believed  not  to 
have  been  previously  immunocompromised  had  such 
skin  lesions  (with  three  dying  after  an  inexorably 
downhill  course)  suggests  that  some  factor  common  to 
all  the  patients  was  operative.  Tlie  fact  that  all  were 
homosexual  men  was  striking.  Reports  of  Kaposi's 
sarcoma  and  opportunistic  infections  similar  to  those 
that  we  observed  (e.g.,  P.  cannii,  Cryptococcus  tuofor- 
mans,  and  cytomegalovirus)  suggest  that  our  findings 
are  part  of  a  nationwide  epidemic  of  immunodeficien- 
cy among  male  homosexuals."'" 

The  most  prominent  and  so-far  unexplained  im- 
munologic finding  in  these  four  men  was  profound 
lymphopenia.  Many  of  the  immunologic  deficits  that 
we  measured  could  be  attributed  to  this  state  of  ap- 
parent lymphocyte  depletion.  Skin  anergy  was  pres- 
ent in  all  subjects.  When  the  responses  to  in  vitro 
stimulation  with  plant  lectins  and  antigens  could  be 
determined,  they  showed  moderate  to  marked  de- 
pressions in  lymphocyte  proliferative  ability.  Difficul- 
ty in  interpretation  of  these  data  arises  because  of  the 
paucity  of  available  lymphoid  cells  and  their  dilution 


122 


1442 


THE  NEW  ENGLAND  JOURNAL  OF  MEDICINE 


Dec.  10,  1981 


Table  1 .  Evidence  of  Ulcerative  Herpes  Simplex  and  Other  Infections  among  Four  Homosexual  Me.n. 


EvtDCNCl 

iKTicnoH* 

^ 

HSV 

CMV 

HBUK( 

HBlAb 

CadUc 

airtnU 

ADDWVnUS 

Enummii 
hUulyiUa 

fia  o/patitmu  fiutHw/iu 

■  uiai 

Pontive  culture 

*/* 

0/4 

t 

t 

2/4 

t 

1/4 

t 

Morphologic  (active  infoctioa) 

*/* 

3/4 

t 

t 

2/4 

1/4 

1/4 

0/4 

Serologic 

Prior  exposure 

3/4 

2/4 

0/4 

2/4 

t 

t 

0/1 

1/4 

Active  infection  (titer  rije) 

l/« 

1/4  t 

1/4 

0/4 

t 

t 

0/1 

0/4 

*HSV  dcoolM  herpes  timpki  vims,  CMV  cytomcfsioviius,  HBsAg  hepatitis  B  surfsce  satigen,  and  HBsAb  sntibody  to  HBaA«. 

tStiidy  was  either  inappropriau  or  not  performed. 

tAoother  patieat  (Patieot  4)  had  a  cytomcfalovinjs  titer  bdow  1:8  oocompleaieatGMtioa  when  fiist  studied;  on  a  repeat  study  two  weeks  later  the  titer  was  1:8. 


by  monocytes  in  the  mononuclear-cell  isolates.  Rela- 
tive monocytosis  in  mononuclear-cell  preparations  is 
known  to  lead  to  poor  in  vitro  proliferative  re- 
sponses." Among  the  lymphoid  cells  present,  there 
was  specific  depression  of  cells  forming  sheep-eryth- 
rocyte  rosettes  in  two  patients  and  a  relative  rise  in 
cells  bearing  the  Leu-2a  phenotype  in  one  patient. 
The  relative  rise  implies  an  increase  in  the  ratio  of 
suppressor  to  helper  cells  among  the  lymphoid-cell 
populations  —  a  finding  that  we  (unpublished  data) 
and  others'*  have  observed  in  cases  of  infectious 
mononucleosis.  Attempts  to  rectify  the  lymphoid-cell 
responses  of  one  patient  in  vitro  by  means  of  thymic 
humoral  factors"  were  unsuccessful.  When  these  find- 
ings were  taken  together,  a  severe  defect  in  cellular 


immunity,  which  had  been  suspected  on  clinical 
grounds,  was  confirmed.  The  defect  can  be  charac- 
terized as  a  progressive  state  of  lymphocyte  depletion 
and  consequent  dysfunction,  in  which  cellular  immu- 
nity is  principally  affected. 

The  specific  host  defense  against  HSV  is  jjoorly 
understood.  Although  patients  with  depressed  lym- 
phocyte counts  or  T-lymphocyte-macrophage  dys- 
function tnight  be  expected  to  have  severe  illness  sec- 
ondary to  HSV,  the  vast  njajority  of  such  patients  do 
not.  Consequently,  it  is  suspected  that  other  factors 
play  an  important  part  in  HSV-specific  host  defense. 
The  group  of  patients  most  frequently  reported  to  be 
susceptible  to  ulcerative  HSV  are  those  who  have  had 
immunosuppression  for  organ  transplantation.  Re- 


Table  2.  Immunologic  Findings  In  Patients  and  Controls. 


DeUyed-type  skin  response 

Abaent 

Abwnt 

Absent 

Abseat 

Praeal 

Mean  lymphocyte  count 

657 

435 

316 

360 

tOOO-4800 

T  cells  (pet  cent) 

Sheep  rosettes 

70 

59,79 

28 

69.55 

80j:7 

Leu-1 

ND 

89 

S3 

65 

78±5 

Leu-2a 

ND 

20 

62 

29 

32±9 

Phytohemagglutinin 

11,832 

1.509 

U13 

613 

23,100 

968 

475 

231 

29,00014,400 

Concanavalin  A 

1.683 

1.767 

674 

386 

1,372 

767 

478 

576 

21,00016,200 

Pokewced  mitogen 

S.63S 

1.148 

3.887 

766 

4,136 

1,067 

132 

589 

15.80015,100 

Antigen  responses  in  vitro 

Absent 

QNS 

QNS 

QNS 

Positive 

Mixed  leukocyte  reaction 

1,50S 

QNS 

QNS 

QNS 

>5000 

(net  cpm  t) 
Natural  killing  of  HS  V- 

8J.I.4 

0 

OJ-21.7 

15.7 

111(52-239) 

infected  target  cells  t 

Serum  immunoglobtiUn 
(mg/dO 
■gO 

864-1394 

2360 

1660 

1370-1710 

JOO-1500 

■SA 

322-375 

445 

435 

420-1431 

40-300 

IgM 

133-300 

90 

230 

55-275 

40-200 

Isohemagglutinin 

Reciprocal 

Titers  (anti-A/B) 

-/8 

«/- 

32/8 

4/0 

>4 

B  ceUs  (per  cent  IgM-positive) 

0 

QNS 

8 

8 

6±2 

Immune  complexes 

0 

0.20 

0.20 

0.04 

0.04 

<0.I2 

*ND  denotd  "not  detenDioed,"  ud  QNS  "quantity  not  uifnaent  [for  detenninatioD)." 

TN«t  cpm  -  (cpm  stimulated)  -  (cpm  ■■wtjiwi.twi  cootrol),  where  cpm  -  couou  (per  miouu)  of  tritUted  tbymidiM  tooorponted  after  three  dayi'  cuhure  (five  days  for  mixed 
leukocyte  reaction). 

tKillinf  -  (cytotoxicity  toward  infected  tarfcu)  -  (cytotoxictty  toward  uninfected  tar|ca),  expreMed  ■>  lytic  uniu  per  milliliter  of  blood.  Normal  ru«e  -  ±2  S.D.  00  loot-tno*' 
formed  data." 


123 


Vol.  305     No.  24 


ULCERATIVE  HERPES  —  SIEGAL  ET  AL. 


1443 


cently,  cells  that  confer  "natural"  immunity  and  do 
not  require  prior  exposure  to  their  specific  target  cells 
have  been  described.  Certain  natural-killer  cells  are 
thought  to  be  involved  in  the  host  defense  against 
HSV  in  mice  and  in  human  beings."'^''  Overwhelm- 
ing disseminated  HSV  infection  in  neonates  and  in 
some  adults  is  associated  with  depressed  natural-kill- 
er activity  of  this  sort."  We  measured  this  type  of 
natural-killer  cell  in  our  patients  because  of  their 
unusual  HSV  lesions.  On  a  "per-cell"  basis,  the  nat- 
ural-killer cells  in  two  of  the  four  patients  were  ab- 
normally hyporesponsive.  Moreover,  in  view  of  the 
paucity  of  mononuclear  cells  present  per  unit  of  blood, 
the  calculated  herpes-directed  natural-killer  activity 
was  severely  depressed  in  all  patients.  Thus,  a  com- 
mon absence  of  HSV-directed  natural-killer  activity 
may  be  involved  in  the  development  of  the  ulcerative 
skin  lesions. 

The  cause  of  the  immunodeficiency  disorder  that 
we  observed  is  undoubtedly  complex.  Viral  infection, 
especially  in  unusually  heavy  inoculum  transmitted 
by  enteric  routes,  may  be  an  important  initiating 
factor. 

Infection  by  a  great  many  viruses  such  as  measles  or 
rubella  can  result  in  depressed  delayed-type  hyper- 
sensitivity.^' Primary  cytomegalovirus  infection  has 
been  associated  with  a  particularly  prolonged  cellu- 
lar immuribdeficiency  state."'"  Exposure  to  cyto- 
megalovirus is  known  to  be  particularly  heavy  within 
the  homosexual  community;  a  94  per  cent  prevalence 
has  been  defined  by  anticomplement  immunofluores- 
cence." A  series  of  four  previously  healthy  homosexu- 
al men  with  active  cytomegalovirus  infections  compli- 
cated by  P.  carinii  pneumonia  has  been  reported."  In 
our  series,  disseminated  cytomegalovirus  was  found  at 
autopsy  in  Patients  1  and  3,  and  on  biopsy  and  by 
seroconversion  in  Patient  2.  Cytomegalovirus  must  be 
considered  a  candidate  initiator  of  the  immune  de- 
fects observed. 

Serum  immunoglobulins  were  increased.  The  con- 
sistent elevation  of  serum  IgA  levels  could  reflect  the 
importance  of  gut-associated  lymphoid  tissue  as  a  pri- 
mary site  of  immunization  in  this  disorder.  Battisto 
and  Chase  described  a  state  of  antigen-specific  hypo- 
responsiveness  occurring  after  oral  immunization" 
that  has  recently  been  reported  to  result  from  the 
seeding  of  suppressor  cells  to  non-gut-associated  lym- 
phoid tissue."  The  immune  deficit  that  we  observed 
could  likewise  result,  in  part  from  the  route  of  expo- 
sure to  viral  pathogens. 

Since  these  cases  are  certainly  rare,  even  among 
homosexuals,  additional  factors  must  ht  involved  in 
susceptibility.  A  group  may  be  specifically  hypore- 
sponsive to  HSV,  perhaps  because  of  their  genetic 
background  —  e.g.,  HLA-D-linked  immune-rc- 
■sponse  genes.  Heavy  exposure  to  HSV  could  lead  to 
xhronic  infection,  and  secondary  immunodeficiency 
could  then  result.  At  present,  no  group  has  been  de- 
fined that  is  genetically  susceptible  to  HSV. 

Still  another  possibility  is  that  among  men  who  are 
homosexual,  some  have  a  latent,  broad-based  cellular 


immunodeficiency  that  becomes  clinically  manifest 
only  because  of  heavy  exposure  to  certain  pathogens 
in  particular  combinations.  For  example,  a  homosex- 
ual male  nurse  whom  we  studied  recovered  from 
Pneumocystis  pneumonia  but  eventually  died  at 
another  hospital  of  recurrent  Pneumocystis  and  cyto- 
megalovirus pneumonia.  He  had  markedly  depressed 
cellular  immunity  in  vitro  and  increased  proportions 
of  Leu-2a-positive  cells  among  his  T  lymphocytes.  Ex- 
tensive history  taking  by  one  of  us  (B.R.A.)  indicated 
susceptibility  to  a  variety  of  infectious  agents  over  the 
previous  20  years,  suggesting  a  low-grade  cell- 
mediated  immunodeficiency. 

Severe  malnutrition  probably  accentuated  the  im- 
mune deficits  that  we  observed."  By  the  time  these 
patients  came  under  study,  all  were  anorectic  and 
cachectic  and  had  been  chronically  ill  for  many 
months.  Because  of  the  specific  immunosuppressive 
effects  of  zinc  deficiency,"  plasma  zinc  levels  were  de- 
termined; they  were  found  to  be  normal  in  all  four  pa- 
tients, but  three  were  nevertheless  given  zinc  salts  em- 
pirically. In  addition,  efforts  were  made  to  improve 
overall  protein-calorie  intake  through  oral  and  paren- 
teral nutritional  supplements.  Neither  of  these  ap- 
proaches seemed  to  alter  the  patients'  clinical  courses 
appreciably. 

In  view  of  the  relative  preservation  of  immunologic 
functions  early  in  the  course  of  the  illness  in  Patient  4, 
immu.ie  deficits  like  those  we  observed  appeared  to  be 
progressive  with  time.  It  seems  possible  that  earlier 
recognition  and  prospective  study  of  such  patients  will 
reveal  an  anomaly  in  host  defense  that  could  illumi- 
nate the  pathogenesis  of  this  disorder. 

There  was  no  obvious  contact  between  the  four 
men.  To  ascertain  whether  there  was  any  epidemio- 
logic relation  among  the  viral  strains  isolated,  we 
submitted  samples  of  the  viruses  for  restriction-endo- 
nuclease  mapping"  (by  Dr.  Bernard  Roizman,  Uni- 
versity of  Chicago).  The  isolates,  all  Type  2,  were 
found  to  be  unrelated. 

We  are  indebted  to  Drs.  Mark  Chapman,  Lawrence  Ouiai,  Bur- 
ton J.  Lee,  Jose  Romeu,  Donald  T.  Evans,  and  Mark  Kunkel  for  al- 
lowing us  to  study  their  patients,  and  Drs.  Jose  Giron,  Joseph 
Masci,  and  Roslyn  Posner  for  their  help  in  treating  the  patients. 


Note  addtd  in  fmoj:  We  recently  studied  a  fifth  patient,  a  45-year- 
old  homosexual  man  with  a  nine-month  history  of  hepatitis,  gradu- 
al wasting,  eventual  intcrgluteal  herpes  simplex  ulcers,  and  proba- 
ble herpes  encephalitis.  During  the  period  of  study,  lymphoid 
function  was  initially  normal,  but  it  later  deteriorated.  Lymphope- 
nia developed  only  late  in  the  course.  Natural-killer-cell  activity 
studied  while  the  patient  had  normal  lymphocyte  counts  was  very 
depressed. 

Refebences 

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3.  BeanSF.FusaroRM.  Atypical  cutaneous  Herpes  simplex  infection  •>■ 
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celb  using  an  enzyme-linked  immunosorbent  assay.  Clin  Exp  Immu-  mation  of  circulating  antibody.  J  Exp  Med.  1965;  121:591-606^ 

nol    1980-40:411-5.  26.    Winchester  RJ.  Human  and  expenmental  pathology.  Theme  18  Sum- 

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complexes  in  human  sera  by  simpUfied  assays  with  polyethylene  glycol.  27.    Keusch  GT.  The  effects  of  malnutnlion  on  host  responses  and  the  met- 

J  Immunol  Methods.  1977;  16:165-83.  aboUc  sequelae  of  infections.  In:  Grieco  MH.  ed.  Infecuons  in  the  ab- 

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17.    Berlinger  NT,  Lopez  C,  Good  RA.  Faciliution  or  atlentuation  of  138:488-98. 

Dr.  Siegal.  Our  laboratories,  which  in  effect  are  extramural 
arms  of  the  NIH,  had  begun  to  respond.  And  as  the  cases  grew 
from  two  and  then  five,  and  as  we  heard  from  infectious  disease 
specialists  of  other  cases  in  New  York,  we  turned  the  efforts  of  our 
laboratories  from  their  originally  intended  projects  to  the  problem 
of  this  peculiar  new  disease. 

By  now,  just  among  our  group  alone,  unfortunately,  we  have  al- 
ready studied  more  than  150  cases.  Unfortunately,  our  studies  have 
revealed  a  stereotyped  pattern  of  progressive  immunologic  failure, 
with  an  unrelenting  course  that  no  one,  as  Dr.  Conant  has  pointed 
out,  has  yet  been  able  to  reverse. 

Dr.  Michael  Gottlieb  at  UCLA,  another  federally  funded  young 
clinical  investigator,  deserves  the  credit  for  notifying  CDC  about 
the  outbreak.  He  and  his  colleagues  in  Los  Angeles  were  going 
through  much  the  same  process  there  as  we  were  experiencing  in 
New  York. 

In  the  spring  of  1981,  we  knew  through  the  grapevine  even 
before  the  June  1981  issue  of  Morbidity  and  Mortality  Weekly 
Report  what  we  had  been  clinically  struggling  with  and  puzzling 
over  was  a  nationwide  epidemic. 

By  August  that  year  CDC  had  officially  reported  HI  cases  of 
what  we  now  call  AIDS. 

As  you  have  heard  or  will  hear  at  these  sessions,  CDC  from  the 
outbreak  committed  itself  vigorously  to  the  problem,  placing  at  the 
head  of  its  task  force  on  AIDS  one  of  the  most  brilliant  and  com- 
mitted public  health  investigators  I  have  ever  had  the  privilege  of 
knowing,  Dr.  James  Curran. 


125 

I  believe  that  the  efforts  of  this  team  have  been  excellent  and  ap- 
propriate. But  I  understand  that  in  order  to  carry  out  his  mission 
in  AIDS,  CDC  had  to  divert  its  already  tight  funds  from  other  im- 
portant work.  Symptomatic  of  the  funding  programs  was  the  end  of 
free  distribution  of  Morbidity  and  Mortality  Weekly  Report,  which 
many  of  us  viewed  as  a  setback  for  the  dissemination  of  informa- 
tion on  epidemic  diseases  and  a  disservice  to  public  health  in  gen- 
eral. 

In  March  1982,  Dr.  David  Sencer,  commissioner  of  health  for  the 
city  of  New  York,  convened  the  first  of  many  monthly  meetings  for 
those  involved  in  AIDS.  Although  some  of  us  had  research  funds 
that  were  geared  to  indepth  study  of  a  few  patients,  they  clearly 
were  insufficient  to  deal  with  the  citywide  public  health  emergen- 
cy. There  was  no  existing  mechanism  to  quickly  obtain  support  for 
a  major  effort  to  work  out  the  epidemiology,  etiology,  immunology, 
and  therapy  of  AIDS. 

On  our  behalf,  Dr.  Sencer  requested  Federal  help  in  a  letter  of 
May  17,  1982,  to  Dr.  Wyngaarden,  Director  of  NIH,  that  I  know  to 
be  available  to  this  committee. 

Three  months  elapsed  before  the  first  RFA  on  AIDS  was  put  out 
under  which  we  first  received  funding  on  May  1,  1983,  almost  a 
year  after  Dr.  Sencer's  letter,  and  almost  2  years  after  the  out- 
break had  been  officially  reported  by  the  CDC. 

I  am  told  that  this  RFA  had  a  shorter  turnaround  time  than 
most  as  a  result  of  efforts  to  facilitate  peer  review.  While  I  whole- 
heartedly agree  that  careful  critical  peer  review  is  essential,  I  be- 
lieve we  must  quickly  work  out  how  we  can  expedite  it  still  further 
for  the  next  public  health  emergency,  especially  if  H.R.  2713  deal- 
ing with  these  crises  should  become  funded. 

A  delay  of  1  to  2  years  between  the  perception  of  a  major  prob- 
lem and  its  initial  earmarked  funding  is  unconscionably  long. 

Despite  a  severe  lack  of  allocated  funds,  things  were  not  standing 
still  in  AIDS  research  between  1982  and  early  1983.  Many  local  in- 
vestigators did  as  we  did,  diverting  their  attention  in  research  sup- 
port from  other  problems  to  this  new  one.  The  NIH  became  in- 
volved early,  admitting  cases  for  study  to  the  Clinical  Center,  hold- 
ing meetings  in  Bethesda,  and  funding  of  these  elsewhere. 

The  FDA  efforts  too  in  basic  investigation  and  in  providing  guid- 
ance for  the  improved  safety  of  blood  products  should  not  be  forgot- 
ten. 

All  in  all,  I  believe  the  Federal  response  to  AIDS  to  have  been 
excellent  at  the  level  of  the  CDC,  although  underfunded,  but  very 
slow  and  insufficient  in  delivering  funds  for  specific  basic  research. 
The  early  gains  in  the  disease  such  as  its  initial  identification  and 
characterization  can  be  attributed  largely  to  the  long  term  public 
investment  in  academic  tertiary  care  centers. 

This  in  turn  depended  on  the  past  commitment  to  basic  research 
and  to  the  training  of  young  people  for  biomedical  education  which 
flowered  because  of  the  foresight  of  those  in  the  Congress  who  pro- 
vided the  means. 

Many  of  us  thought  we  had  pretty  much  seen  the  end  of  infec- 
tious diseases  as  a  major  scourge  of  mankind.  The  tremendous  suc- 
cess of  antibiotics  and  now  even  of  some  antiviral  agents  has  per- 
haps lulled  us  into  an  inappropriate  sense  of  security.  Consequent- 


26-097    0—83- 


126 

ly,  we  have  lowered  our  research  priorities  in  communicable  dis- 
eases including  those  that  are  sexually  transmitted. 

The  National  Institutes  of  Allergy  and  Infectious  Diseases  now 
lags  behind  the  other  institutes  at  NIH  in  its  ability  to  fund  ap- 
proved research  applications  even  in  areas  directly  germane  to 
AIDS.  In  view  of  the  likelihood  that  public  health  emergencies  will 
involve  infectious  diseases,  we  cannot  afford  to  neglect  that  insti- 
tute. 

Thank  you  for  the  opportunity  to  share  my  perspective  with  you, 
Mr.  Chairman  and  Members  of  Congress. 

I  will  be  happy  to  answer  any  of  your  questions. 

Mr.  Weiss.  Thank  you  very  much. 

STATEMENT  OF  DR.  MATHILDE  KRIM,  ASSOCIATE  MEMBER, 
HEAD  OF  INTERFERON  LABORATORY,  SLOAN-KETTERING  IN- 
STITUTE FOR  CANCER  RESEARCH,  NEW  YORK,  N.Y. 

Dr.  Krim.  Mr.  Chairman,  my  name  is  Mathilde  Krim.  I  hold  a 
Ph.  D.  degree  and  the  position  of  associate  member  at  the  Sloan- 
Kettering  Institute  for  Cancer  Research  in  New  York  where  I  head 
the  interferon  laboratory.  I  have  expertise  in  interferon  research, 
virology,  and,  generally,  in  biology.  Certain  studies  done  in  my  lab- 
oratory complement  those  of  the  clinical  investigators  in  our 
cancer  center  who  explore  the  use  of  interferon  preparations  in  the 
treatment  of  human  disease,  including  Kaposi's  sarcoma  in  pa- 
tients with  the  acquired  immune  deficiency  syndrome. 

I  am  also  the  chairperson  of  the  board  of  trustees  of  the  recently- 
founded  AIDS  Medical  Foundation.  This  Foundation  was  created 
by  a  group  of  collaborating  investigators  from  several  research  in- 
stitutions who  are  actively  engaged  in  laboratory  and  clinical  re- 
search on  AIDS.  The  Foundation's  purpose  is  to  conduct  and  fund 
research  on  AIDS. 

Its  collaborative  network  was  originally  brought  together  by  Dr. 
Joseph  Sonnabend,  of  New  York  City. 

I  am  reading  only  parts  of  my  testimony. 

Mr.  Weiss.  Your  entire  statement  will  be  entered  into  the  record. 

Dr.  Krim.  Yes,  thank  you. 

There  are  two  things  I  would  like  to  point  out  with  regard  to  the 
Foundation,  because  they  were  mentioned  earlier  here. 

One  is  that  we  share  with  some  of  this  morning's  witnesses  a 
great  concern  for  the  ethical  problems  raised  by  research  with 
human  subjects,  particularly  those  afflicted  with  AIDS,  since  a 
large  proportion  of  them  are  members  of  a  minority  which  is  still 
openly  discriminated  against  in  this  country.  Therefore,  we  have, 
as  a  Foundation,  an  interest  in  undertaking  or  supporting  studies 
on  the  feasibility  of  devising  protections  which  would  not  impede 
the  provision  of  necessary  data  to  legitimate  research  efforts  but 
will  do  so  only  within  the  context  of  maximum  protection  for  the 
identity  and  privacy  of  research  subjects. 

We  are  also  concerned  by  the  ignorance  about  AIDS  existing  in 
the  public,  and  very  often  among  caregivers  themselves,  which  re- 
sults in  fear  and,  as  a  result  of  fears  and  uncertainty,  there  is  prej- 
udice and  in  certain  cases  even  hate.  This  sad  situation  has  given 
rise,   as  we   heard  this   morning,   to   incidents  of  discrimination 


127 

against  a  minority  group.  And  if  identity  and  privacy  of  patients  is 
not  protected  carefully,  it  could  result  also  in  incidents  of  discrimi- 
nation against  homosexuals. 

So  to  make  up  for  this  great  need  for  accurate  information  our 
Foundation  will  also  have  a  program  on  publication  of  medical  and 
scientific  advances  translated  into  simple  language  for  the  public 
at  large  and  nursing  personnel  in  particular. 

Now,  the  substance  of  my  testimony  addresses  two  questions: 

Why  should  we  as  a  society  be  concerned  about  AIDS  and  what 
should  we  ask  the  Government  to  do  that  it  is  not  doing  yet. 

The  reasons  for  concern  derive  I  believe  from  two  considerations. 
One  is  humanitarian.  The  other  one  is  a  very  pragmatic  one,  which 
breaks  down  into  public  health  considerations  and  societal  consid- 
erations. 

As  for  humanitarian  considerations,  they  are  based  on  the  fact 
that  AIDS  has  killed,  after  crippling  and  maiming  for  months  on 
end,  hundreds  of  mostly  young,  previously  healthy,  often  highly 
gifted,  productive  people.  It  is  paralyzing  with  fear  hundreds  of 
thousands,  if  not  millions,  more.  The  anguish  it  is  causing  is  im- 
measurable. It  can  hardly  be  placated  by  words  of  reassurance  in  a 
situation  of  continuing  ignorance  of  the  cause  or  causes  of  the  dis- 
ease, and  of  its  precise  mode  of  transmission. 

Epidemiological  data  suggests  transmission  from  person-to-person 
through  prolonged,  intimate  contact,  which  would  seem  to  indicate 
that  spread  of  the  disease  may  not  be  very  rapid.  But  in  fact  it  is 
increasing,  and  the  rate  of  increase  has  been  close  to  doubling 
every  6  months.  There  are  also  lingering  doubts  that  perhaps  there 
can  be  transmission  through  a  single  blood  transfusion,  for  exam- 
ple. 

Groups  at  risk  are  acutely  aware  of  these  uncertainties,  and 
suffer  great  anguish  from  them. 

An  aspect  of  the  situation  that  goes  largely  unrecognized,  al- 
though it  contributes  to  its  nightmarish  quality,  is  that  of  the  un- 
certainty of  diagnosis.  AIDS  is  an  insidious  disease  with  no  clear 
onset.  No  single  test  has  as  yet  become  available  that  can  unequiv- 
ocably  diagnose  AIDS  before  one  of  several  life-threatening  and 
usually  uncontrollable  infections  makes  diagnosis  certain  but,  by 
then,  futile. 

At  that  point  in  the  disease  it  is  too  late  for  preventative  meas- 
ures and,  when  the  disease  is  fully  established,  also  much  too  often 
too  late  for  useful  medical  intervention.  No  treatment  has  yet 
proven  to  be  life-saving. 

In  about  40  percent  of  the  patients  a  multifocal,  uncontrolled 
proliferation  of  endothelial  cells  occurs  under  the  skin  and  internal 
mucous  membranes,  which  has  been  called  Kaposi's  sarcoma.  This 
added  complication  is  probably  not  a  true  malignancy,  but  it  is 
highly  visible,  progressive  and  irreversible  if  treated  unsuccessful- 
ly. AIDS  patients  also  have  a  high  incidence  of  true  malignancies 
such  as  lymphomas,  squamous  cell  carcinomas,  and  probably  other 
cancers. 

Because  the  occurrence  of  an  opportunistic  infection  and /or  Ka- 
posi's sarcoma  or  cancer,  on  a  background  of  severe  cell-mediated 
immune  deficiency,  constitutes  the  only  unquestionable  diagnosis 
of  AIDS,  the  disease  has  been  defined  on  the  basis  of  such  a  combi- 


128 

nation  by  the  Centers  for  Disease  Control.  How  and  when  the  un- 
derlying immune  deficiency  becomes  severe  enough  to  allow  for 
"CDC-AIDS"  to  develop  is  still  anyone's  guess. 

Many  people  from  the  general  healthy  population  may  present  at 
times  with  transient  but  measurably  deficient  immune  functions 
without  suffering  obvious  ill  effects.  However,  because  of  the  lack 
of  clear,  early  diagnostic  criteria  for  AIDS,  any  immune  function 
test  that  produces  abnormal  results  in  a  male  homosexual  now 
spells  terror. 

Physicians  are  at  a  loss  to  provide  specific  advice  because  they 
cannot  tell  if  and  when  a  deadly  infection,  Kaposi's  sarcoma,  or 
cancer  are  likely  to  strike,  nor  can  they  tell  concerned  individuals 
how  to  prevent  this  from  happening.  Immunodeficient  gay  men 
therefore  live  in  a  limbo,  left  to  their  own  devices  and  private  de- 
spair. 

There  is  today  no  effective,  accepted  treatment  for  CDC-AIDS, 
nor  for  Kaposi's  sarcoma.  A  very  high  mortality  rate  is  an  undis- 
puted fact:  a  40-percent  death  rate  1  year  after  diagnosis  and  an 
80-percent  death  rate  after  2  years. 

I  suggest  that  humanitarian  concern  is  in  order  when  a  disease 
is  so  cruel  and  so  severe  that  it  kills  so  many  and  terrorizes  so 
many  more.  Mere  compassion  should  long  ago  have  been  sufficient 
reason  for  action. 

As  for  general  public  health  considerations,  the  distinct  possibil- 
ity still  exists  that  the  new  infectious  agents  might  be  causally  in- 
volved in  AIDS.  Such  an  agent  might  bo  transmitted  through  blood 
and  would  undermine  immune  defense  mechanisms  important  in 
the  protection  againt  microorganisms  causing  opportunistic  infec- 
tions, or  against  malignancies.  Such  an  agent  would  not  cause 
overt  disease;  rather,  it  would  act  slowly  over  a  period  of  many 
months  during  which  time  the  person  infected  by  it  might  unknow- 
ingly be  contagious.  AIDS,  with  its  dramatic  late  manifestations, 
would  then  only  represent  the  end  result  of  an  insidious,  much  ear- 
lier infection  with  the  hypothetical  agent. 

Sociocultural  factors,  such  as  degree  of  sexual  promiscuity,  would 
then  represent  only  a  contributing  factor  which  merely  increases 
likelihood  of  viral  transmission.  Alternatively,  environmental  fac- 
tors favoring  multiple  infections  with  common  microorganisms 
could  predispose  individuals  to  infection  by  a  new,  immunosuppres- 
sive viral  agent. 

If  one  of  these  scenarios  proves  correct,  there  is  truly  no  saying 
where  the  epidemic  will  stop.  Some  24  infants  have  contracted 
AIDS  or  an  AIDS-like  disease  and  18  have  already  died.  More  than 
100  women  have  contracted  the  disease,  and  most  are  dead. 

Are  we  witnessing  the  slow  spreading  of  the  disease  beyond  the 
neat  high  risk  groups  identified  in  early  epidemiological  surveys?  If 
this  may  be  so,  can  we  indulge  in  the  luxury  of  waiting  to  find  out 
if  this  is  so,  when  we  know  that  months  and  perhaps  years  may 
have  to  elapse  before  the  clearcut  CDC-AIDS  develops? 

Wouldn't  the  situation  be  sufficiently  alarming  to  everyone  to 
justify  throwing  the  weight  of  the  spectacular  advances  made  in 
recent  years  in  virology,  molecular  biology  and  immunology  at  the 
crucial  question  of  whether  or  not  a  new  virus,  perhaps  one  related 
to  the  recently  discovered  human  T-cell  leukemia  virus,  is  the  real 


129 

culprit  for  AIDS?  If  such  a  virus  were  to  be  identified  as  the  true 
cause  of  AIDS,  vaccines  could  be  produced  and  rational  preventa- 
tive measures  could  be  devised. 

I  am  concerned  also  about  the  societal  consequences  of  AIDS.  I 
think  the  preservation  of  hard-won  civil  liberties  also  calls  for  a 
rational,  rapid  and  effective  solution  to  the  problems  of  AIDS. 

Words  of  reassurance  sound  hollow  to  many  in  the  face  of  medi- 
cal ignorance  of  AIDS's  causes,  mode  of  spread,  and  effective  treat- 
ment. Uncertainty  breeds  fear.  AIDS  may  not  only  be  destroying 
lives  but  also  the  very  fabric  of  a  humane  and  progressive  society, 
on  which  this  country  prides  itself. 

Couples  have  been  torn  apart,  thousands  of  young  men  have 
been  abandoned  by  family  and  friends,  a  minority  group  is  victim- 
ized by  incidents  of  gross  prejudice  leveled  indiscriminately  at  its 
members. 

Our  blood  banks  are  in  jeopardy.  The  whole  blood  banking 
system  is  in  jeopardy  in  this  country.  Already  scenarios  for  the 
quarantine  of  groups  perceived  to  be  "contagious"  are  emerging  in 
thoughts,  talk,  and  even  writing.  The  atmosphere  of  doom  and 
total  helplessness  surrounding  the  problem  of  AIDS  threatens  to 
push  us  back  into  a  medieval  society,  complete  with  the  equivalent 
of  colonies  of  pariahs  and  lepers  and,  since  homosexuality  is  not 
going  to  disappear  from  the  face  of  this  Earth,  maybe  we  will  also 
have  colonies  of  "heretics"  in  hiding  and  an  inquisition  to  find 
them  out. 

What  should  we  ask  our  Government  to  do  in  this  situation? 

I  believe  that  if  there  ever  was  a  problem  that  cried  for  money  to 
be  thrown  at  it,  AIDS  is  such  a  problem.  Our  biomedical  research 
community  is  now  suffering  under  recently  imposed  funding  cuts 
which  impede  its  healthy  growth  rate  and,  in  many  institutions, 
preclude  its  functioning  at  earlier  levels  of  activity  and  excellence. 

On  the  other  hand,  extraordinary  scientific  advances  have  been 
made  in  recent  years  in  the  very  areas  pertinent  to  the  solution  of 
the  problem  of  AIDS.  A  much  better  understanding  has  been 
gained  of  basic  mechanisms  of  infection,  immunity,  cancer  develop- 
ment and  their  biological  control.  This  is  putting  into  our  hands 
powerful  new  tools  for  investigations  of  the  etiology,  diagnosis  and 
treatment  of  infections  and  cancer. 

AIDS,  a  condition  where  all  these  pathologies  are  interrelated, 
can  also  be  seen  as  an  extraordinarily  challenging  "experiment  of 
nature."  If  offered  support  for  their  studies,  thousands  of  scientists 
could  be  enrolled  virtually  overnight  to  investigate  every  aspect  of 
this  intriguing  condition. 

As  for  the  areas  of  research  to  be  supported,  I  believe  that  scien- 
tists will  want  to  work  in  the  following  areas:  They  would  like  to 
conduct  thorough  extensive  epidemiological  studies  going  much 
beyond  the  necessarily  early  superficial  studies  carried  out  so  far 
by  the  CDC,  which  are  limited  to  this  country.  The  epidemiology  of 
AIDS  should  be  studied  in  Africa,  where  the  disease  has  been  re- 
ported and  in  the  Caribbean  region,  in  Latin  America,  and  in 
Europe. 

Epidemiological  studies  could  precisely  identify  risk  factors  and 
thus  make  rational  prevention  possible. 


130 

Scientists  would  like  to  develop  reliable  diagnostic  criteria  for 
the  disease.  Only  systematic  prospective  clinical  studies  involving 
many  patients  of  both  sexes,  with  different  lifestyles  and  life  his- 
tories, can  result  in  a  definition  of  clear  predictive  diagnostic  crite- 
ria. Such  studies  are  of  utmost  importance  and  urgency.  They  are, 
however,  logistically  and  scientifically  complex  and  therefore  also 
costly.  They  are  beyond  the  capability  of  any  single  clinic  and  labo- 
ratory, because  they  require  expertise  in  multiple  clinical  and  sci- 
entific disciplines.  They  would,  however,  allow  rapid  progress  in  ar- 
riving at  an  understanding  of  how  AIDS  develops,  and  they  could 
also  lead  to  accurate  diagnosis,  prognosis,  and  perhaps  prevention. 

In  this  regard,  I  believe  that  the  Government,  in  addition  to 
funding,  could  help  in  planning  and  in  offering  resource  support. 
This  would  be  needed  in  the  collection  and  storing  of  clinical  speci- 
mens, their  distribution  to  a  variety  of  laboratories  representing 
broad  biological  and  immunological  expertise,  and  the  storage,  re- 
trieval and  analysis  of  a  large  number  of  laboratory  epidemiolog- 
ical and  clinical  data. 

I  believe  that  the  areas  of  virology  and  immunology  of  AIDS 
must  be  the  object  of  a  host  of  studies  that  are  needed  as  part  of  an 
intensive  laboratory  search  for  a  possible  viral  etiological  agent  for 
which  there  is  a  suspicion  but,  for  the  moment  no  proof. 

Few  clues  exist  as  to  which  type  of  virus,  if  any,  may  be  so  in- 
volved. Until  we  know  better,  many  viruses  must  each  be  suspected 
and  investigated.  Out  of  this  research  will  also  come  the  answer, 
for  blood  banks  of  how  to  identify  infectious  blood  donations. 

A  systematic  study  of  the  immunological  abnormalities  of  AIDS 
patients  must  also  be  carried  out:  how  these  abnormalities  develop 
in  the  course  of  time  in  various  high  at-risk  groups,  how  they  cor- 
relate with  manifestations  of  viral  and  other  infections,  how  they 
correlate  with  a  patient's  genetic  constitution,  history,  and  life- 
style. 

Again,  these  studies  must  involve  many  specialized  laboratories, 
in  order  to  cover  the  whole  spectrum  of  specific  and  nonspecific  im- 
munize functions  that  can  be  studied. 

The  group  of  patients  and  controls  studied  in  these  biological  and 
immunological  respects,  must  be  those  followed  clinically  in  the 
large  prospective  studies  mentioned  earlier.  Such  laboratory  stud- 
ies will  result  in  information  on  the  etiology  of  AIDS  and  its  diag- 
nosis, treatment  and  prevention. 

And  lastly,  we  must  develop  methods  of  treatment. 

CDC-AIDS  has  so  far  been  incurable.  However,  there  are  glim- 
mers of  hope.  Some  have  come  from  clinical  trials  with  interferon 
alpha.  Over  half  of  the  interferon-treated  Kaposi's  sarcoma  pa- 
tients have  not  only  seen  their  lesions  regress  or  disappear  com- 
pletely, but  they  have  remained  during  treatment  and  for  several 
months  thereafter,  up  to  some  2  years  by  now,  free  of  deadly  oppor- 
tunistic infections.  They  have  even  exhibited  some  favorable 
changes  in  their  immune  reactivity.  Immunological  improvement 
has  not  been  seen  following  chemotherapy,  although  the  latter  has 
also  been  successful,  sometimes,  in  making  the  lesions  of  Kaposi's 
sarcoma  regress. 

Limited  clinical  trials  of  interferon  alpha  in  Kaposi's  sarcoma  have 
so  far  been  sponsored  only  by  industrial  companies  that  produce  in- 


131 

terferon  from  recombinant  bacteria  and  want  to  develop  it  as  a 
commercial  product,  and  probably  also,  on  a  few  patients,  by  the 
National  Cancer  Institute.  Trials  have  been  limited  to  a  handful  of 
patients,  their  numbers  having  been  determined  principally  by  the 
companies'  need  for  information  to  be  provided  to  the  Food  and 
Drug  Administration. 

In  New  York,  to  my  knowledge,  only  one  hospital,  at  the  Memo- 
rial Sloan-Kettering  Cancer  Center,  where  I  work,  is  involved  in  in- 
terferon trials  with  alpha  interferon.  The  treatment  remains  un- 
available to  most  AIDS  patients. 

I  believe  that  the  Food  and  Drug  Administration  should  review 
the  present  evidence  which  comes  from  reputed  clinical  research 
centers  in  New  York,  in  Bethesda  and  in  California,  and  see  wheth- 
er it  is  not  sufficient  to  warrant  the  immediate  provision  by  the 
NIH  of  interferon  alpha  to  interested  clinicians  for  the  treatment 
of  patients  with  Kaposi's  sarcoma,  foregoing  requirements  for 
double  blind  trials  in  the  development  of  this  form  of  therapy  for 
this  particular  disease. 

Personally,  I  believe  that,  in  the  absence  of  any  other  effective 
and  safe  treatment,  the  present  evidence  of  interferon's  effective- 
ness should  be  considered  sufficient  to  make  this  form  of  therapy 
immediately  available  to  all  those  who  may  benefit  from  it.  This 
should  be  done  as  early  as  possible  following  the  appearance  of  Ka- 
posi's sarcoma  lesions  because  this  is  a  situation  clearly  favoring  a 
response. 

I  also  believe  that,  at  this  point,  not  making  interferon  available 
now  may  literally  amount  to  sentencing  a  substantial  number  of 
people  to  sure  early  death,  because  we  know  that  Kaposi's  sarcoma 
is  a  progressive,  lethal  disease  and,  it  is  clear  that  interferon  can  at 
least  prolong  life. 

Furthermore,  interferon  is  not  the  only  promising  biological.  In- 
terleukin  2,  another  product  of  human  lymphoid  cells,  may  also 
have  immune-enhancing  properties  and  it  could  potentiate  interfer- 
on's effects  in  vivo  as  it  does  in  vitro.  Clinical  trials  of  interleukin  2 
alone,  and  in  combination  with  interferon  therapy,  appear  war- 
ranted immediately.  The  exploration  of  other  interferons,  lympho- 
kines,  and  differentiation  factors,  alone  and  in  combination,  first  in 
vitro  and  then  in  vivo,  should  be  encouraged  through  grants  from 
the  Program  of  Biological  Response  Modifiers  of  the  National 
Cancer  Institute. 

These  are  but  two  areas  in  which  immediate  progress  in  therapy 
might  be  made.  There  are  other  approaches  to  therapy,  both  for 
the  underlying  immunological  disease  and  its  infectious  and  malig- 
nant complications.  There  is  the  use  of  plasmapheresis,  there  are 
methods  to  remove  immunoglobulin  complexes,  there  are  methods 
to  remove  suppressor  cells  from  the  blood,  there  are  certain  drugs 
that  are  not  immunosuppressive  that  could  be  tried  either  alone  or 
in  combination  with  interferon. 

Logistical  and  financial  aspects  to  be  considered  in  recommend- 
ing Government  intervention: 

First  of  all,  there  is  no  lack  of  ideas  in  the  scientific  community 
on  what  to  do  about  AIDS.  I  believe  that  the  research  needed  can 
therefore  be  done  almost  exclusively  through  investigator-originat- 


132 

ed  proposals  in  the  form  of  individual  research  grants  and/or  col- 
laborative program  projects. 

Central  Government  planning  should  be  limited  to  helping  with 
organizational  and  logistical  problems  in  which  the  Government 
could  be  very  useful  in  facilitating  collaborations  between  experts 
in  different  disciplines. 

Our  National  Institutes  of  Health  could,  if  directed  to  do  so,  set 
up  mechanisms  for  fair  and  rapid  allocation  of  funds  and  so  avoid 
long  delays— such  as  the  usual  18  months— before  funding.  One  or 
more  ad  hoc  review  committees  could  be  appointed  for  the  very 
purpose  of  reviewing  and  expediting  the  funding  of  projects  in 
AIDS  research  The  imagination,  the  talent  and  the  ingenuity  are 
there  in  the  biomedical  research  community  fully  capable  of  ad- 
dressing the  many  scientific  and  medical  challenges  presented  by 
AIDS. 

What  is  most  needed  from  the  Government  is  the  money.  And  I 
don't  mean  money  from  the  CDC  or  the  NIH,  that  is,  taken  from 
Peter  to  pay  Paul,  which  would  cause  internal  disruptions,  delays, 
and  justifiable  resentments. 

On  top  of  already  severe  cuts  suffered  by  the  CDC  in  1983,  it  is 
unrealistic  and  almost  outrageous  to  expect  this  agency  to  do  more 
now,  in  1984,  with  a  budget  for  its  AIDS  program  that  will  be  ex- 
actly $300,000  less  than  it  was  in  1983.  Much  the  same  can  be  said 
for  the  NIH. 

What  is  needed  in  the  face  of  a  national  emergency  is  new 
money  such  as  this  country  has  always  found  whenever  it  has  set 
itself  to  do  a  real  job. 

How  much  money  is  needed?  One  way  of  calculating  it  is  to  take 
into  account  that  the  treatment  of  each  CDC- AIDS  patient  is  now 
well  over  $100,000  per  year  if  he  is  treated  properly.  Since  much  of 
the  treatment  that  can  be  offered  is  experimental,  much  of  it  is  al- 
ready done  at  taxpayers'  expense,  through  research  grants,  as  we 
heard  earlier  from  Dr.  Siegal. 

Even  if  only  half  the  present  cost  of  treatment  is  borne  by  tax- 
payers, the  bill  amounts  already  to  $100  million  per  year.  And  this 
covers  only  some  2,000  patients  with  CDC-AIDS  with  the  frustrat- 
ing result  of  seeing  them  die  anyway. 

The  additional  figures  I  think  we  must  think  of  for  a  comprehen- 
sive program  of  research  on  AIDS  must  be  of  the  same  magnitude 
as  the  expenses  we  incur  already.  That  is  about  $100  million.  If 
roughly  doubling  the  present  financial  burden  imposed  by  the  dis- 
ease may  insure  a  resolution  of  the  problem  rather  than  permitting 
it  to  grow  and  fester  as  it  does  now,  it  seems  clear  that  such  an 
investment  must  be  made. 

Finally,  for  those  who  may  still  feel  that  not  enough  people  have 
died  and  that  AIDS  has  not  caused  sufficient  tragedy  and  anguish, 
let  me  end  by  stating  that  an  appropriate  investment  in  AIDS  re- 
search will  certainly  benefit  all  of  us  in  the  long  run,  and  in  more 
than  one  way. 

Understanding  AIDS  will  undoubtedly  greatly  improve  our  abili- 
ty to  understand  and  therefore  learn  to  control  the  biological 
events  leading  to  acquired  immune  deficiency,  susceptibility  to  in- 
fections and  cancer  in  general.  This  will  benefit  infinitely  larger 


133 

numbers  of  people  than  only  those  suffering  from,  or  at  risk  of, 
AIDS  itself. 

There  can,  therefore,  only  be  winners  in  what  I  propose  here. 

Gentlemen  of  the  committee,  there  is  therefore  no  reason  and  no 
excuse  not  to  try  and  your  decision  should  be  very  easy. 

Mr.  Weiss.  Thank  you  very  much,  Dr.  Krim. 

[The  prepared  statement  of  Dr.  Krim  follows:] 


134 

Prepared  Testimony  of  Mathilde  Krim,  Ph.  D.,  Associate  Member,  Head,  Inter- 
feron Laboratory,  Sloan-Kettering  Institute  for  Cancer  Research,  August 
1,  1983 

My  name  is  Mathilde  Krim.   I  hold  a  Ph.D.  degree  and  the 
position  of  Associate  Member  at  the  Sloan-Kettering 
Institute  for  Cancer  Research  in  New  York  where  I  head  its 
Interferon  Laboratory.   I  have  expertise  in  interferon 
research,  virology  and,  generally,  in  biology.   Certain  stu- 
dies done  in  my  laboratory  complement  those  of  the  clinical 
investigators  in  our  Cancer  Center  who  explore  the  use  of 
interferon  preparations  in  the  treatment  of  human  diseases, 
including  Kaposi's  sarcoma  in  patients  with  the  acquired 
immune  deficiency  syndrome  (AIDS). 

I  am  also  the  Chairperson  of  the  Board  of  Trustees  of  the 
recently  founded  AIDS  Medical  Foundation.   This  Foundation 
was  created  by  a  group  of  collaborating  investigators  from 
several  research  institutions  who  are  actively  engaged  in 
laboratory  and  clinical  research  on  AIDS.   We  are  studying, 
in  a  coordinated  fashion,  the  same  large  group  of  patients 
and  control  subjects,  and  we  exchange  information  on  our 
respective  results. 

This  collaborative  network  was  formed  at  the  initiative 
of  Dr.  Joseph  A.  Sonnabend,  himself  a  distinguished  virolo- 
gist and  interferon  expert  who  has  spent  much  of  his  pro- 
fessional life  in  academia.   Dr.  Sonnabend  presently  prac- 
tices medicine  in  downtown  New  York  City.   He  was  among  the 
first  physicians  to  observe  cases  of  severe  immunodeficiency 
and  opportunistic  infections  among  men  living  in  the  New 
York  area.   He  became  alarmed  about  it,  since  it  appeared  to 
be  a  new  disease  in  this  patient  population,  and  he  initiated 


135 


research  into  possible  causes.   Since  no  known  animal  model 
existed,  research  on  the  condition  (later  known  as  AIDS)  had 
to  be  done  on  the  patients  themselves  and/or  on  specimens  of 
cells  and  body  fluids  obtained  from  them.   Dr.  Sonnabend 
enlisted  the  volunteer  cooperation  of  his  patients,  deve- 
loped an  informed  consent  form  for  their  use,  and  at  his  own 
expense  and  through  his  own  efforts,  collected  and  distri- 
buted hundreds  of  specimens  and  relevant  clinical  infor- 
mation to  several  laboratories.   His  own  earlier  experience 
in  academic  research  made  him  eminently  capable  of  contri- 
buting to  the  planning  of  the  research  and  the  interpreta- 
tion of  the  results.   A  number  of  valuable  publications  by 
him  and  his  collaborators  resulted  from  these  efforts. 

In  late  1982,  those  investigators  collaborating  with  Dr. 
Sonnabend  all  felt  that  they  were  making  significant  fin- 
dings, but  all  were  facing  great  financial  difficulties 
after  several  months  of  work  without  support.   One  of 
them--Dr.  Michael  Lange  of  St.  Luke's  Roosevelt  Medical 
Center--obtai ned  a  grant  in  the  amount  of  $22,400,  which 
permitted  him  to  continue  his  work.   This  grant  did  not  come 
from  the  Federal  Government  but  from  the  New  York  City's  Gay 
Men's  Health  Crisis  group.   Unfortunately,  the  amount 
soon  proved  inadequate  for  the  support  of  his  increasing 
AIDS  work  load.   By  the  fall  of  '82,  Dr.  Lange  was  studying 
over  150  men  with  different  stages  of  the  disease.   At  great 
expense,  he  was  following  them  prospectively  through  a 


136 


battery  of  specialized  tests  administered  to  each  patient 
every    four  months. 

By  the  spring  of  1983,  it  was  becoming  clear  that  despite 
much  talk  of  possible  supplemental  appropriations  by 
Congress,  no  funding  for  AIDS  research  would  be  available 
for  many  months.   Since  most  of  us  had  already  more  than 
exhausted  all  resources  available,  including  personal 
resources,  we  decided  to  form  a  public  foundation  in  order 
to  be  able  to  continue  our  work  through  support  solicited 
from  private  individuals,  foundations  and  corporations.   An 
announcement  of  the  formation  of  the  AIDS  Medical  Foundation 
was  made  on  June  23rd,  1983.   It  was  well  received  by  the 
press.   Comments  of  approval  and  encouragement  were  also 
received  from  many  individuals.   These  were  people  from  all 
walks  of  life.  Some  were  patients  or  relatives  of  patients; 
others  were  motivated  only  by  feelings  of  compassion  and 
decency.   This  public  response  has  been  heartwarming.   It 
augurs  well  for  the  Foundation's  ability  to  accomplish  its 
primarity  goal,  i.e.  to  keep  alive  the  work  of  those 
investigators  initially  involved  in  its  creation  and  even- 
tually to  accept  for  review  and  funding  other  applications 
for  AIDS-related  projects.   Without  early  support  from  the 
Foundation,  many  of  these  projects  now  face  certain  ter- 
mination. 

Foundation  support  will  be  wide  open  to  any  scientifically 
valid  approach  to  the  study  of  the  new  syndrome. 


137 


Selection  of  projects  will  be  made--as  for  all  Foundation- 
supported  research--on  the  basis  of  scientific  merit  alone 
as  determined  by  an  impartial  scientific  peer  review  commit- 
tee.  The  Foundation  has  an  interest  in  studies  on  indivi- 
duals from  all  high  risk  groups,  including  infants. 
Although  the  Foundation  will  concentrate  on  biomedical  stu- 
dies, we  are  very   mindful  of  the  complex  ethical  problems 
that  arise  when  research  must  be  carried  out  on  human  sub- 
jects, particularly  such  as  may  be,  or  become,  subject  to 
public  health  reporting.   Patient  volunteers  and  the 
Foundation  itself  have  serious  and  clearly  legitimate  con- 
cerns about  possible  breaches  of  privacy  which  might  result 
in  patient  vulnerability  to  discriminatory  practices. 
Discrimination  against  homosexuals  can  be,  and  indeed  still 
is,  practiced  with  impunity  in  many  States  of  the  Union  and, 
in  particular,  in  New  York  City.   Therefore,  the  Foundation 
is  also  interested  in  undertaking  or  supporting  studies  on 
the  feasibility  of  devising  protections  which,  while  not 
impeding  the  provision  of  necessary  data  to  legitimate 
research  efforts,  will  do  so  only  within  the  context  of 
maximal  protection  for  the  identity  and  privacy  of  research 
subjects . 

In  addition,  the  Foundation  is  concerned  about  the  con- 
sequences of  irrational  acts  resulting  from  the  fears  bred 
by  ignorance.   Therefore,  it  has  assigned  staff  to  the  task 
of  translating  evolving  biological  and  medical  knowledge  of 


138 


the  disease  into  language  accessible  to  large  audiences, 
specifically,  patients,  groups  at  risk  and  health  personnel, 
The  above  describes  my  involvement  in  AIDS  research  and 
with  the  AIDS  Medical  Foundation,  and  hence,  my  presence 
here. 

I  would  now  like  to  address  two  topics  which  will  form 
the  substance  of  my  testimony. 

I.   WHY  SHOULD  WE,  AS  A  SOCIETY,  BE  CONCERNED  ABOUT  AIDS? 

Reasons  for  concern  derive,  I  believe,  both  from  humani 
tarian  and  pragmatic,  health  and  societal,  considerations. 

a.    Humanitarian  Considerations. 


AIDS  has  killed,  after  crippling  and  maiming  for 
months  on  end,  hundreds  of  mostly  young,  previously  healthy, 
often  highly  gifted,  productive  people.   It  is  paralyzing 
with  fear  hundreds  of  thousands,  if  not  millions,  more.   The 
anguish  it  is  causing  is  immeasurable.   It  can  hardly  be 
placated  by  words  of  reassurance  in  a  situation  of  con- 
tinuing ignorance  of  the  cause  or  causes  of  the  disease,  and 
of  its  precise  mode  of  transmission.   Epidemiological  data 
suggests  transmission  from  person  to  person  through  pro- 
longed, intimate  contact.   It  does  not  preclude  the  possibi- 
lity of  low  level  contagion  through  casual  contact.   In  view 


139 


of  the  likely  long  incubation  period  and  a  few  cases  which 
have  apparently  resulted  from  blood  transfusions  or  alleged 
casual  contact,  no  one  can  say  for  sure,  at  this  point  in 
the  history  of  this  epidemic,  how  many  may  be  just  "at  risk" 
and  how  many  are  already  doomed.   Groups  "at  risk"  are  acu- 
tely aware  of  these  uncertainties  and  suffer  great  anguish. 

An  aspect  of  the  situation  that  goes  largely  unre- 
cognized, although  it  contributes  to  its  nightmarish 
quality,  is  that  of  the  uncertainty  of  diagnosis.   AIDS  is 
an  insidious  disease  with  no  clear  onset.   No  single  test 
has  as  yet  become  available  that  can  unequivocably  diagnose 
AIDS  before  one  of  several  life-threatening  and  usually 
uncontrollable  infections  makes  diagnosis  certain  but,  by 
then,  futile.   At  that  point  in  the  disease,  it  is  too  late 
for  preventative  measures  and,  when  the  disease  is  fully 
established,  also  much  too  often  too  late  for  useful  medical 
intervention.   No  treatment  has  yet  proven  to  be  life- 
saving.   In  about  40  per  cent  of  the  patients,  a  multifocal, 
uncontrolled  proliferation  of  endothelial  cells  occurs  under 
the  skin  and  internal  mucous  membranes,  which  has  been 
called  Kaposi's  sarcoma.   This  added  complication  is  pro- 
bably not  a  true  malignancy,  but  it  is  highly  visible, 
progressive  and  irreversible  if  treated  unsuccessfully. 
AIDS  patients  also  have  a  high  incidence  of  true  malignan- 
cies such  as  lymphomas,  squamous  cell  carcinomas  and  pro- 
bably other  cancers. 


140 


Because  the  occurrence  of  an  opportunistic  infection 
and/or  Kaposi's  sarcoma  or  cancer,  on  a  background  of  severe 
eel  1 -mediated  immune  deficiency,  constitutes  the  only 
unquestionable  diagnosis  of  AIDS,  the  disease  has  been 
defined  on  the  basis  of  such  a  combination  by  the  Centers 
for  Disease  Control  (CDC).   How  and  when  the  underlying 
immune  deficiency  becomes  severe  enough  to  allow  for  "CDC 
AIDS"  to  develop  is  still  anyone's  guess.   Many  people  from 
the  general  "healthy"  population  may  present  at  times  with 
transient  but  measurably  deficient  immune  functions  without 
suffering  obvious  ill  effects.   However,  because  of  the  lack 
of  clear,  early  diagnostic  criteria  for  AIDS,  any  immune 
function  test  that  produces  abnormal  results  in  a  male  homo- 
sexual now  spells  terror.   Physicians  are  at  a  loss  to  pro- 
vide specific  advice  because  they  cannot  tell  if  and  when  a 
deadly  infection,  Kaposi's  sarcoma,  or  cancer  are  likely  to 
strike;  nor  can  they  tell  concerned  individuals  how  to  pre- 
vent this  from  happening.   Immunodef i ci ent  gay  men  therefore 
live  in  a  limbo,  left  to  their  own  devices  and  private 
despair. 

There  is,  today,  no  effective,  accepted  treatment  for  "CDC 
AIDS,"  nor  for  Kaposi's  sarcoma.   A  very  high  mortality  rate 
is  an  undisputed  fact:  a  40  per  cent  death  rate  1  year  after 
diagnosis  and  an  80  per  cent  death  rate  after  2  years. 

I  suggest  that  humanitarian  concern  is  in  order  when  a 
disease  is  so  cruel  and  so  severe  that  it  kills  so  many  and 


141 


terrorizes  so  many  more.   Mere  compassion  should  long  ago 
have  been  sufficient  reason  for  action. 

b .    General  Public  Health  Considerations 

If  compassion  is  not  sufficient  justification  for  an 
immediate  all-out  national  research  effort,  there  are  for 
all  of  us  other,  purely  pragmatic  and  even  selfish  reasons 
forsuchaneffort. 

One  such  reason  is  simply  that  the  distinct  possibility 
still  exists  that  a  new  infectious  agent  might  be  causally 
involved  in  AIDS.   Such  an  agent  might  be  transmitted 
through  blood  and  would  undermine  immune  defense  mechanisms 
important  in  the  protection  against  microorganisms  causing 
opportunistic  infections  and  malignancies.   Such  an  agent 
would  not  cause  overt  disease;  rather^  it  would  act  slowly 
over  a  period  of  many  months  during  which  time  the  person 
infected  by  it  might  unknowingly  be  contagious.   AIDS,  with 
its  dramatic  late  manifestations,  would  then  only  represent 
the  end  result  of  an  insidious,  much  earlier  infection  with 
the  hypothetical  agent.   Soci o-cul tu ra 1  factors,  such  as 
degree  of  sexual  promiscuity,  would  then  represent  only  a 
contributing  factor  which  merely  increases  likelihood  of 
viral  transmission.   Alternatively,  environmental  factors 
favoring  multiple  infections  with  common  microorganisms 
could  predispose  individuals  to  infection  by  a  new,  immuno- 
suppressive viral  agent. 


26-097  O— 83 10 


142 


If  one  of  these  scenarios  proves  correct,  there  is  truly 
no  saying  where  the  epidemic  will  stop.   Some  24  infants 
have  contracted  AIDS  or  an  AIDS-like  disease  and  18  have 
already  died.   More  than  100  women  have  contracted  ths 
disease,  and  most  are  dead.   Are  we  witnessing  the  slow 
spreading  of  the  disease  beyond  the  neat  "high  risk"  groups 
identified  in  early  epidemiological  surveys?   If  this  may  be 
so,  can  we  indulge  in  the  luxury  of  waiting  to  find  out  if 
this  j_s  so,  when  we  know  that  months  and  perhaps  years  may 
have  to  elapse  before  the  clear-cut  "CDC-AIDS"  develops? 
Wouldn't  the  situation  be  sufficiently  alarming  to  everyone 
to  justify  throwing  the  weight  of  the  spectacular  advances 
made  in  recent  years  in  virology,  molecular  biology  and 
immunology  at  the  crucial  question  of  whether  or  not  a  new 
virus  (perhaps  one  related  to  the  recently  discovered  human 
T-cell  leukemia  virus)  is  the  real  culprit  for  AIDS?   If 
such  a  virus  were  to  be  identified  as  the  true  cause  of 
AIDS,  vaccines  could  be  produced  and  rational  preventative 
measures  could  be  devised. 

c.    Societal  Considerations 


The  preservation  of  hard-won  civil  liberties  also  calls 
for  a  rational,  rapid  and  effective  solution  to  the  problems 
of  AIDS. 

Words  of  reassurance  sound  hollow  to  many  in  the  face  of 
medical  ignorance  of  AIDS'  cause(s),  mode  of  spread  and 


143 


effective  treatment.   Uncertainty  breeds  fear.   AIDS 
may  not  only  be  destroying  lives  but  also  the  very  fabric  of 
a  humane  and  progressive  society,  on  which  this  country  pri- 
des itself.   Couples  have  been  torn  apart;  thousands  of 
young  men  have  been  abandoned  by  family  and  friends;  a 
minority  group  is  victimized  by  incidents  of  gross  prejudice 
levelled  indiscriminately  at  its  members.   Already  scenarios 
for  the  quarantine  of  groups  perceived  to  be  "contagious" 
are  emerging  in  thoughts,  talk  and  even  writing.   The 
atmosphere  of  doom  and  total  helplessness  surrounding  the 
problem  of  AIDS  threatens  to  push  us  back  into  a  medieval 
society  complete  with  the  equivalent  of  colonies  of  pariahs 
and  lepers. 

II.  WHAT  SHOULD  WE  ASK  OUR  GOVERNMENT  TO  DO? 


If  there  ever  was  a  problem  in  this  country  that  cried 
for  "money  to  be  thrown  at  it,"  AIDS  is  such  a  problem. 
Our  biomedical  research  community  is  now  suffering  under 
recently  imposed  funding  cuts  which  impede  its  healthy  growth 
rate  and,  in  many  institutions,  preclude  its  functioning  at 
earlier  levels  of  activity  and  excellence. 

On  the  other  hand,  extraordinary  scientific  advances 
have  been- made  in  recent  years  in  the  very  areas  pertinent 
to  the  solution  of  the  problem  of  AIDS.   A  much  better 
understanding  has  been  gained  of  basic  mechanisms  oif  infec- 
tion, immunity,  cancer  development  and  their  biological 


144 


control.   This  is  putting  into  our  hands  powerful  new  tools 
for  investigations  of  the  etiology,  diagnosis  and  treatment 
of  infections  and  cancers.   AIDS,  a  condition  where  all 
these  pathologies  are  interrelated,  can  also  be  seen  as  an 
extraordinarily  challenging  "experiment  of  nature."   If 
offered  support  for  their  studies,  thousands  of  scientists 
could  be  enrolled  virtually  overnight  to  investigate  every 
aspect  of  this  intriguing  condition. 


A.   Areas  of  Research  to  be  Supported 

I  believe  scientists  will  want  to  work  in  the  following  areas 

( 1 )  Thorough,  extensive  epidemiological  studies: 
These  would  expand  the  present  efforts  by  the  Centers  for 
Disease  Control  to  include  other  countries  in  Africa,  the 
Carribbean  region,  Latin  America  and  Europe.   I  would  like 
to  see  such  studies  done  by  the  CDC  in  collaboration  with 
academic  centers  selected  on  the  basis  of  their  epidemiolo- 
gical expertise.   Much  could  be  learned  about  the  cause(s) 
of  AIDS  and,  if  person  to  person  spread  occurs,  about  the 
mechanisms  of  transmission.   Epidemiological  studies  could 
precisely  identify  risk  factors  and  thus  make  rational  pre- 
venti  on  possi  bl e  . 

(2)  Developing  reliable  diagnostic  criteria:  Only 
systematic,  prospective  studies  such  as  those  now  being 
carried  out  by  Dr.  Michael  Lange  and  his  colleagues  will 


145 


lead  to  the  definition  of  clear,  predictive  diagnostic  cri- 
teria.  Such  studies  are  of  utmost  importance  and  urgency. 
They  must  involve  large  numbers  of  subjects,  including  men 
and  women  with  different  sexual  preferences  and  life  styles, 
all  studied  repeatedly  through  multiple  tests,  over  a 
protracted  period  of  time.   Such  studies  are  logistically 
and  scientifically  complex  and  therefore  costly.   They  are 
beyond  the  capability  of  any  single  clinic  and  laboratory 
because  they  require  expertise  in  multiple  clinical  and 
scientific  disciplines.    They  would,  however,  insure  rapid 
progress  in  arriving  at  an  understanding  of  how  AIDS  deve- 
lops, and  they  could  also  lead  to  accurate  diagnosis, 
prognosis  and  perhaps  prevention. 

In  addition  to  funding,  government  planning  and  resource 
support  may  be  needed  here  for  (a)  the  collection  and 
storage   of  clinical  specimens,  (b)  their  distribution  to  a 
variety  of  laboratories  representing  broad  vir.ological  and 
immunological  expertise,  and  (c)  the  storage,  retrieval  and 
analysis  of  a  large  number  of  laboratory,  epidemiological 
and  clinical  data. 


(3)   Virology  and  Immunology:   A  host  of  studies  need  to 
be  done  as  part  of  an  intensive  laboratory  search  for  a 
possible  viral  etiological  agent.   Few  clues  exist  as  to 
which  type  of  virus,  if  any,  may  be  so  involved.   Until  we 
know  better,  many  viruses  must  each  be  suspected  and 


146 


appropriate  efforts  must  be  made  to  identify  specific  anti- 
bodies, viral  antigens  and  viral  genomes  or  genome  fragments. 

A  systematic  study  of  the  immunological  abnormalities  of 
AIDS  patients  must  be  also  carried  out:   how  they  develop  in  the 
course  of  time,  in  various  "at  risk"  groups;  how  they  corre- 
late with  manifestations  of  viral  and  other  infections;  how 
they  correlate  with  the  patient's  genetic  constitution, 
history  and  lifestyle.   These  studies  must  involve  many  spe- 
cialized laboratories  in  order  to  cover  the  whole  spectrum 
of  specific  and  non-specific  immune  functions  that  can  be  studied, 

The  group  of  patients  and  controls  studied  in  these 
respects  must  be  those  followed  clinically  in  large  prospec- 
tive studies  mentioned  above  under  "b."   Such  laboratory 
studies  will  result  in  information  on  the  etiology  of  AIDS 
and  therefore  on  its  diagnosis,  treatment  and  prevention. 

(4)   Development  of  methods  of  treatment:   "CDC-AIDS" 
has,  so  far,  been  incurable.   However,  glimmers  of  hope  have 
come  from  clinical  trials  of  interferon  alpha.   Over  half  of 
the  interferon-treated  Kaposi's  sarcoma  patients  have  not 
only  seen  their  lesions  regress  or  disappear  completely,  but 
they  have  remai ned--duri ng  treatment  and  for  months 
thereafter--f ree  of  deadly  opportunistic  infections.   They 
have  even  exhibited  some  favorable  changes  in  their  immune 
reactivity.   This  has  not  been  seen  following  chemotherapy, 
although  the  latter  can  also  be  effective  in  making  Kaposi's 
sarcoma  lesions  regress. 


147 


Interferon  trials  in  Kaposi's  sarcoma  have  so  far  been 
sponsored  only  by  industrial  companies  that  produce  infer- 
feron  from  recombinant  bacteria  and  want  to  develop  it  as  a 
commercial  product.   Trials  have  been  limited  so  far  to  a 
handful  of  patients,  their  numbers  having  been  determined 
principally  by  the  companies'  need  for  information  to  be 
provided  to  the  Food  4  Drug  Administration.   In  New  York, 
only  one  hospital  (at  the  Memorial  SI oan-Ketteri ng  Cancer 
Center)  is  involved  in  interferon  alpha  trials  in  Kaposi's 
sarcoma . 

I  believe  that  the  Food  &    Drug  Administration  should 
review  the  present  evidence  (which  comes  from  reputed  clini- 
cal research  centers),  and  see  whether  it  is  not  sufficient 
to  warrant  the  immediate  provision,  by  the  NIH,  of  intar- 
feron  to  interested  clinicians  for  the  treatment  of  patients 
with  Kaposi's  sarcoma,  foregoing  requirements  for  double- 
blind  trials  in  the  development  of  this  form  of  therapy  for 
this  particular  disease. 

In  the  absence  of  any  other  effective  and  safe  treat- 
ment, I  personally  believe  that  the  present  evidence  of 
interferon's  effectiveness  should  be  considered  sufficient  to 
make  this  form  of  therapy  immediately  available  to  all  those 
who  may  benefit  from  it.   This  should  be  done  as  early  as 
possible  following  the  appearance  of  Kaposi's  sarcoma 
lesions,  a  situation  clearly  favoring  a  response.   Not 
making  interferon  available  now  may  literally  amount  to 


148 


sentencing  a  substantial  number  of  people  to  sure,  early 
death.  It  is  clear  that  interferon  can  at  least  prolong 
life. 

Furthermore,  interferon  is  not  the  only  promising 
biological.   Interleukin-2,  another  product  of  human 
lymphoid  cells,  may  also  have  therapeutic  immune-enhancing 
properties  and  may  potentiate  interferon's  effects  j_n  vi  vo 
as  it  does  j_n  vi  tro .   Clinical  trials  of  interleukin-2 
alone,  and  in  combination  with  interferon  therapy,  appear 
warranted  immediately.   The  exploration  of  other  inter- 
ferons, lymphokines  and  differentiation  factors,  alone  and 
in  combination,  first  j_n  vi  tro  and  then  ji_n  vivo,  should  be 
encouraged  through  grants  from  the  Program  of  Biological 
Response  Modifiers  of  the  National  Cancer  Institute.   These 
are  but  two  areas  in  which  immediate  progress  in  therapy 
might  be  made.   There  are  other  approaches  to  therapy,  both 
for  the  underlying  disease  and  its  complications. 

B .   Logistical  and  Financial  aspects. 

I  believe  that  the  research  needed  can  be  done 
almost  exclusively  through  investigator-originated  proposals 
(ROIs),  in  the  form  of  individual  research  projects  and 
collaborative  program  projects.   Central,  Government  planning 
should  be  limited  to  organizational  and  logistical  problems 
in  which  the  Government  could  be  very  useful  in  facilitating 


149 


collaborations  between  experts  in  different  disciplines. 
The  imagination,  the  talent,  and  the  ingenuity  are  out  there 
in  the  biomedical  research  community,  fully  capable  of 
addressing  the  many  scientific  and  medical  challenges  of  AIDS, 

Our  National  Institutes  of  Health  could--if  directed  to 
do  so--set  up  mechanisms  for  fair  and  rapid  allocation  of 
funds . 

What  is  most  needed  from  the  Government  is  the  money; 
"ot  CDC  or  NIH  money  taken  from  Peter  to  pay  Paul  (which 
would  cause  internal  disruptions,  delays  and  justifiable 
resentments).   On  top  of  already  severe  cuts  suffered  by  the 
CDC  in  1983,  it  is  unrealistic  and  almost  outrageous  to 
expect  this  agency  to  do  more  in  1984,  with  a  budget  for  its 
AIDS  program  that  will  be  $300,000  less  than  it  was  in  1983. 
Much  the  same  can  be  said  of  the  NIH.   What  we  need  is  the 
new  money  this  country  can  always  find  whenever  it  sets 
itself  to  do  a  real  job . 


How  much  money  is  needed?   The  cost  of  treatment  of  each 
"CDC-AIDS"  patient  is  now  well  over  $100,000  per  year. 
Since  much  of  the  treatment  offered  is  experimental,  much  of 
it  is  done  at  taxpayers'  expense.   Even  if  one  assumes  that 
only  half  the  treatment  expenditures  are  borne  by  taxpayers, 
i.e.  by  the  Government,  the  bill  amounts  already  to  $100 
millions  per  year.   This  covers  only  some  2,000  patients 


150 


with  "CDC-AIDS",  with  the  frustrating  result  of  seeing  them 
die  anyway. 

The  additional  figures  we  must  think  of  for  a  comprehen- 
sive program  of  research  on  AIDS  must  be  of  the  same  magni- 
tude.  The  total  budget  of  a  concerted,  rational  attack  on 
AIDS  through  basic  and  clinical  research  must  also  be  on  the 
order  of  some  $100  Million.   If  roughly  doubling  the  present 
financial  burden  imposed  by  the  disease  may  ensure  a  resolu- 
tion of  the  problem,  rather  than  permitting  it  to  grow  and 
fester,  it  seems  clear  that  such  an  investment  should  be 
made. 

Finally,  for  those  who  may  still  feel  that  not  enough 
people  have  died,  and  that  AIDS  has  not  yet  caused  enough 
tragedy  and  anguish,  let  me  end  by  stating  that  an 
appropriate  investment  in  AIDS  research  will  certainly  bene- 
fit all  of  us  in  the  long  run,  and  in  more  than  one  way. 
Understanding  AIDS  will  undoubtedly  greatly  improve  our  abi- 
lity to  understand  and  therefore  learn  to  control,  the 
biological  events  leading  to  acquired  immunodeficiency, 
susceptibility  to  infections  and  cancer  in  general.   This 
will  benefit  infinitely  larger  numbers  of  people  than  those 
suffering  from  AIDS.   There  can,  therefore,  only  be  winners 
in  what  is  proposed  here. 


Gentlemen  of  the  Committee,  there  is  no  excuse  not  to 
try  and  your  decision  should  be  easy. 


151 

Mr.  Weiss.  Again,  the  testimony  that  is  being  presented  is  ex- 
tremely important.  Unhappily,  we  do  have  a  time  problem.  The 
House  is  m  session  and  the  bells  may  go  off  at  any  time  for  votes. 
So  I  would  urge  you  to  try  to  summarize  your  presentations. 

Dr.  Voeller. 

STATEMENT  OF  DR.  BRUCE  VOELLER,  PRESIDENT,  THE 
MARIPOSA  EDUCATION  AND  RESEARCH  FOUNDATION 

Dr.  Voeller.  First  let  me  second  the  motions  that  my  colleagues 
and  predecessors  have  made  thanking  the  committee  for  holding 
these  hearings.  I  think  they  are  of  enormous  importance,  and  the 
service  being  done  is  very  great  indeed,  because  the  magnitude  of 
the  funding  problem  and  the  planning  problem  that  exist  goes  far 
beyond  what  the  public  or  governmental  agencies  have  been  aware 
of  or  certainly  have  publicized. 

Again,  others  before  me  have  quoted  the  administration  to  the 
effect  that  their  first  order  of  priority  is  AIDS;  that  from  the  lead- 
ers of  the  Public  Health  Service  and  the  HHS.  I  think  that  it  is 
important  to  recognize  that  action  does  not  jibe  with  HHS  pro- 
claimed policy  of  "No.  1  priority." 

There  have  now  been  nearly  3  years  where  at  least  some  of  us, 
significant  numbers  of  us,  have  been  aware  of  the  scope  and  seri- 
ousness of  the  problem  of  AIDS,  and  during  that  entire  time  the 
Centers  for  Disease  Control,  the  NIH,  and  the  Food  and  Drug  Ad- 
ministration, and  in  larger  form  HHS,  have  not  convened  so  much 
as  a  single  large-scale  national  meeting  of  scientists  and  physicians 
from  the  private  sector  as  well  as  of  government  to  develop  a  com- 
prehensive master  plan  for  discovering  the  cause  of  AIDS  and  for 
the  developing  of  techniques  for  treating  and  preventing  AIDS. 

To  be  sure,  there  have  been  small-scale  limited-project  commit- 
tees. Indeed  Dr.  Bove  and  I  have  served  on  two  of  those,  dealing 
with  AIDS  and  blood,  at  the  invitation  of  those  governmental  agen- 
cies. But  the  fact  remains  that  there  has  not  been  any  major  con- 
vening of  people  to  discuss  and  develop  an  overall  plan  and  in  fact 
the  truth  is  very  simple,  that  there  is  no  such  master  plan,  and  one 
is  extraordinarily  badly  needed. 

That  need  is  because  of  a  whole  array  of  things: 

First  of  all,  we  need  to  have  an  itemized  list  of  all  the  conceiv- 
able kinds  of  research  that  could  be  done.  You  have  heard  by  my 
predecessors  today,  a  number  of  them,  in  the  areas  of  immunology 
and  virology  and  the  like. 

We  need  to  have  more  than  anecdotal  lists,  we  need  comprehen- 
sive lists.  We  need  to  have  lists  which  are  prioritized,  as  well,  so 
that  popular  scientific  areas  not  be  the  only  ones  on  those  lists,  and 
that  things  which  may  be  much  less  generative  of  publicity,  of 
which  we  have  seen  a  great  deal  in  the  press  over  the  past  year 
and  a  half  or  two,  be  supplemented  by  ones  that  may  be  much 
slower  to  give  results,  much  less  likely  to  be  aimed  at  Nobel  Prizes 
or  in  major  funds  for  the  institutions  supporting  the  people  doing 
the  research  which  has  the  publicity. 

We  must  not  let  those  long-range  projects  lapse  in  favor  of  more 
popular  conceptions. 


152 

We  must,  furthermore,  have  such  a  national  master  policy  or 
plan  for  the  purpose  of  peer  review.  The  various  branches  of 
Health  and  Human  Services,  as  you  well  know,  have  peer  review 
for  all  manner  of  things  considered  an  essential  part  of  the  fund 
granting  process,  and  it  absolutely  needs  to  recognize  that  here, 
too,  the  Government  can  benefit  from  outside  opinion,  criticism, 
and  honing  of  any  master  plan,  and  making  sure  of  the  things  I 
have  already  mentioned  as  inclusions  in  it. 

Further,  we  have  heard  here  today  from  various  people  the 
degree  to  which  they  are  conducting  individual  projects.  There  is 
unwitting  duplication;  there  is  redundancy,  because  people  do  not 
know  what  the  Government  is  planning  or  what  others  are  up  to. 
So  we  must  have  a  master  plan  which  can  in  fact  let  all  of  us  know 
what  the  Government  plans  either  to  do,  or  through  its  resources 
to  support  others  doing  outside  the  Government. 

Finally,  we  need  to  be  able  to  coordinate  the  roles  the  Govern- 
ment at  the  Federal  level  and  State  and  city  levels  play. 

As  you  probably  know.  New  York  State  and  the  city  of  San  Fran- 
cisco have  already  allocated  sizable  funds  for  AIDS  research  and 
the  State  of  California  has  funds  pending.  They  need  to  be  integrat- 
ed into  the  planning.  We  cannot  afford  the  loss  of  time  and  pre- 
cious resources  that  will  come  from  unwitting  duplication,  redun- 
dancy, and  repetitiveness. 

It  has  to  be  said,  I  think  very  clearly,  that  there  has  been  an 
overall  lack  of  Federal  leadership  in  this  area,  and  that  the  re- 
search that  has  been  done  has  been  fragmented  and  ill-coordinated. 
Lacking  a  master  plan,  it  should  be  obvious  as  well  that  no  realis- 
tic budget  can  be  devised. 

For  the  administration  and  the  Congress  to  be  considering  small 
amounts  of  money,  from  my  point  of  view,  and  from  what  you  have 
heard  from  others  who  have  testified  here,  creates  an  enormous 
problem.  If  you  don't  have  a  master  plan,  how  can  you  produce  a 
meaningful,  valid  budget?  So  it  becomes  obvious  from  that  factor 
alone  that  a  master  plan  is  called  for,  needed,  and  wanted. 

And  I  will  tell  you  that  the  size  and  amounts  of  the  moneys  that 
are  being  talked  about  are  a  drop  in  the  bucket  compared  to  what 
is  really  needed.  If  we  look  at  only  one  or  two  examples,  it  will 
become  evident. 

Take  one,  a  smaller  one  actually.  Interleukin  2  is  reported  to  cost 
about  $125,000  per  patient  to  test  at  the  NIH.  Four  people  are 
being  tested,  a  tiny  number  in  terms  of  any  kind  of  medical  or  sci- 
entific research  for  testing  something  that  then  would  have  to  be 
used  on  masses  of  people.  If  we  were  to  look  at  something  on  the 
order  of  50  people  at  $125,000,  we  are  talking  already  nearly  half  of 
the  budget  initially  asked  for  by  the  administration  in  this  country 
for  all  AIDS  research — $14  million. 

Second,  if  we  look  at  a  far  more  costly  example,  one  of  the  clear 
things  that  was  mentioned  earlier  today  as  well  was  the  need  for 
an  experimental  animal  model.  In  order  to  determine  a  cause — this 
is  classic  Koch's  Postulates,  which  if  you  had  any  biological  train- 
ing you  learned  in  high  school  or  in  college  medicine — you  must 
first  isolate  what  you  think  is  the  causal  agent,  then  find  a  host  to 
reintroduce  it  into  to  see  if  the  host  contracts  the  disease.  We  don't 
have  an  animal  to  test  it  in. 


153 

It  is  fine  to  believe  this  or  that  virus  may  cause  AIDS.  It  is  fine 
to  carry  out  an  array  of  immunological  and  virological  studies.  But 
at  some  point  we  have  to  go  back  and  study  whether  or  not  the 
agent  we  believe  is  the  causal  agent  is  in  fact  the  real  one,  before 
we  go  to  the  enormous  cost  and  time-consuming  process  of  develop- 
ing vaccines. 

I  could  not  agree  more  with  Dr.  Conant,  with  what  he  had  to  say 
about  working  on  prevention.  We  first  need  to  know  if  we  have 
identified  the  right  beast  before  we  do  that. 

Well,  most  of  the  standard  laboratory  animals  have  been  looked 
at.  Things  such  as  rabbits,  rats,  guinea  pigs,  et  cetera,  appear  not 
to  be  susceptible  to  AIDS  tissues  or  fluids  from  patients  with  AIDS. 
Consequently,  we  must  move  to  the  rather  more  time  consuming, 
costly  and  difficult  area  of  using  primates.  No  one  has  a  clue  at 
this  point  whether  any  primate  will  be  susceptible  to  AIDS.  But 
what  we  do  need  to  do  immediately,  because  of  the  much  greater 
medical  affinity  and  physiological  affinity  of  primates  to  human 
beings,  is  begin  to  look  to  see  if  any  primate  species  is  susceptible 
to  human  AIDS.  Marmosets  don't  seem  to  be. 

I  have  calculated— and  I  won't  go  through  all  the  figures  here, 
inasmuch  as  they  are  in  my  written  presentation  to  you— that  if 
one  looks  at  only  six  species  of  primates,  and  takes  the  relatively 
small  number  of  25  individual  animals  per  species— and  since  we 
believe  that  AIDS  has  an  average  incubation  of  close  to  2  years  in 
human  beings,  and  have  no  reason  to  suspect  it  would  be  particu- 
larly different  among  primates— if  you  multiply  all  those  factors 
out,  plus  one  extremely  critical  one  from  the  Centers  for  Disease 
Control,  a  cost  of  approximately  $100  a  day  per,  animal  to  raise  pri- 
mate animals  for  this  kind  of  research,  then  you  end  up  with  a 
figure  of  almost  $200  million  merely  to  discover  an  animal  which 
then  can  be  used  for  tests.  Such  an  animal  could  be  used  to  deter- 
mine whether  or  not  any  of  our  short-term  scientific  tests  have 
been  effective  in  identifying  a  causal  agent.  We  are  then  also  more 
able  to  go  forward  to  do  the  kind  of  logical  step-by-step  slow  re- 
search which  could  lead  to  the  isolation  of  a  product  or  a  virus  or 
whatever  may  turn  out  to  cause  AIDS. 

Just  to  flesh  that  theoretical  skeleton  out  a  bit,  if  we  think  that 
blood  may  be  the  causal  agent  out  of  an  array  of  things  which 
might  cause,  or  at  least  carry  AIDS,  we  would  want  to  test  whole 
blood  in  our  animal.  This  is  after  we  have  an  experimental  animal 
to  introduce  it  into. 

Then  we  would  want  to  fractionate  blood  to  see  whether  or  not 
the  active  AIDS  factor  was  associated  with  plasma,  with  red  cells, 
with  white  cells,  with  some  subset  of  any  of  those,  whether  it  was  a 
protein,  whether  it  was  in  fact  susceptible  to  cleaning  up,  if  you 
will,  whether  it  was  liable  to  heat  treatment,  to  various  enzymes, 
to  pH  changes  or  treatment  with  urea,  all  of  which  would  have  rel- 
evance in  terms  of  treatment  of  persons  with  AIDS,  or  who  must 
have  AIDS-free  blood  products,  as  well  as  in  developing  a  vaccine. 

So  the  point  is  that  merely  to  discover  an  animal  which  is  sus- 
ceptible amongst  the  primates,  to  conduct  our  research  on,  could 
readily  and  easily  cost  $200  million  or  more,  might  even  end  up 
costing  a  great  deal  more  because  of  the  limited  number  of  ways 


154 

we  can  set  about  doing  such  trials.  Only  then  do  we  begin  the  kind 
of  research  that  I  have  described. 

I  want  to  point  out  a  couple  of  things  that  I  think  are  important 
in  connection  with  all  of  this. 

One  of  them  is  that  I  am  delighted  that  as  many  people  have 
spoken  as  have  here  today  about  the  costs  that  are  associated  with 
doing  this  work. 

I  would  like  to  point  out,  however,  that  in  the  circle  of  people 
that  I  have  approached  and  talked  to  about  this,  including  people 
from  the  various  branches  of  the  Federal  agencies  dealing  with 
AIDS,  and  with  people  at  universities  around  the  country,  they  are 
frankly  afraid  to  come  and  testify  at  hearings  like  this  because  of 
fear.  In  the  case  of  the  governmental  workers,  repeatedly  they 
have  told  me  that  they  cannot  say  the  things  that  I  am  saying, 
much  as  they  concur  in  them,  because  they  are  under  an  effective 
gag  order  by  the  administration  in  terms  of  any  public  statement 
or  private  statement  that  differs  from  the  administration's  policy 
that  budgets  in  these  areas  are  not  to  be  increased. 

The  same  holds  for  many  researchers.  They,  too,  are  dependent 
upon  Federal  grants  from  the  NIH  or  other  institutions  in  the  Gov- 
ernment, and  are  extremely  reluctant  and  fearful  of  the  conse- 
quences and  reprisals  that  will  happen  if  they  publicly  state  the 
things  I  am  telling  you.  I  am  not  alone  in  my  point  of  view  that  I 
am  presenting  here.  And  I  wish  those  people  could  and  would  come 
forth.  But  I  can  see  why  they  do  not. 

All  of  this,  these  realities  of  the  need  for  a  master  plan  and  the 
costs  which  I  think  can  hardly  be  expected  to  be  less  than  half  a 
billion  dollars  over  the  next  couple  of  years,  not  the  few  millions 
that  we  have  been  talking  about,  but  upward  of  half  a  billion  dol- 
lars, can  only  be  evaluated  by  taking  steps  to  get  a  proper  assess- 
ment outside  the  government  itself. 

Because  of  its  commitment  to  defense  and  not  to  social  service 
projects,  I  think  the  administration  disqualifies  itself  instantly.  We 
have  had  repeated  testimony  today  that  confirms  my  view.  Why  is 
there  not  even  a  master  plan?  Because  if  there  were,  everyone 
could  see  the  gross  funding  deficiency. 

What  can  be  done? 

The  National  Academy  of  Science  was  created,  I  believe  by  Presi- 
dent Lincoln  a  century  ago,  roughly,  to  do  just  this  kind  of  work, 
which  is  to  advise  the  Government  on  matters  of  science.  The  Insti- 
tute for  Medicine  at  the  Academy,  or  some  private  group,  such  as 
the  American  Public  Health  Association,  should  I  think  be  asked  to 
do  a  crash  review  of  all  of  these  issues,  and  to  make  recommenda- 
tions of  a  comprehensive,  depoliticized  plan  of  action,  and  assign  a 
properly  prepared  budget  recommendation  to  accompany  the  plan. 

It  is  my  belief  that  unless  these  steps  are  taken,  hundreds  of 
thousands  of  Americans  and  people  around  the  world  will  be  killed 
needlessly  and  inexcusably  by  AIDS.  It  has  been  reported  by  others 
before  me  that  the  cost  of  medical  treatment  is  about  $100,000  per 
person.  Since  AIDS  has  been  around  nearly  3  years  now,  if  we  look 
forward  another  3  years,  we  can  expect  something  of  the  order  of 
at  least  50,000  people  to  have  AIDS,  at  $100,000  apiece.  Coldheart- 
ed  as  looking  at  mere  dollars  and  treatment  and  hospitalization 


155 


It  seems  to  me  that  a  half  billion  dollars  for  research-iust  10 
percent  of  those  hospital  costs  is  a  very  economical  amount  of 
money  for  us  to  be  looking  at  in  the  Congress  to  deal  with  thi 
AIDS  crisis  by  comparison. 

wh^i  W^:/'  a  scientist  who  has  observed  what  has  happened  and 
Tn^  f^f  'if^^'/T  ^''  f«"^^^fs  are  suffering  from  a  lack  of  funds 
and  the  kind  of  master  battle  plan  that  is  needed,  I  begin  to 
wonder  with  a  certain  cynicism  if  perhaps  the  only  route  by  which 
we  are  realistically  going  to  get  the  needed  Federal  leadership  i^ 
when  the  Armed  Forces  begin  to  turn  up  cases  of  AIDS 

And  that  disaster  is  happening,  though  it  is  not  a  matter  of 
public  information  yet.  Indeed,  it  is  rather  shocking  to  me  that  the 
public  and  probably  all  of  you  in  Congress  don't  know  but  there 
are  now  at  least  a  dozen  cases  of  AIDS  in  the  U.S.  Armed  Forces 
t^m^tT  'PZ\r;^^''  budgets  seem  to  be  without  limit,Te  may  S 
timately  find  the  moneys  to  do  the  things  we  should  already  be 
doing.  We  cannot  wait.  dneduy  ue 

Thank  you. 

Mr.  Weiss.  Thank  you  very  much. 

[The  prepared  statement  of  Dr.  Voeller  follows:] 


156 


AIDS  RESEARCH  AND  FUNDING 


by  Bruce  Voeller,  PhD 

♦President,  The  Mariposa  Education 
and  Research  Foundation 


In  testirrony  before  Congress  in  the  past  month.  Assistant  Secretary  for 
Health,  Edward  Brandt,  stataithat  AIDS  is  "our  number  one  priority,"  a  public 
policy  H.H.S.  Secretary  Heckler  echoed  to  the  press.  H.H.S.  action  does  not 
jibe  with  its  proclaimed  policy,  however. 

Despite  three  years  of  intense  interest  in  the  disease,  H.H.S.  has  not 
convened  a  single  national  meeting  of  research  scientists  and  physicians  frctn 
the  private  sector  and  government  to  collaborate  in  developing  a  cotprehensive 
master  plan  for  discovering  the  caijse  of  AIDS  and  of  developing  techniques  for 
prevening  and  treating  AIDS. 

Nor  has  H.H.S.,  or  its  ccnponent  agencies,  even  yet  named  standing  or  ad  hoc 
panels  of  outside  authorities  to  advise  and  counsel  the  Department  on  AIDS,  a 
procedure  they  consider  essential  in  their  Department's  review  of  applications 
for  scientific  research  grants  given  out  by  the  Department.  In  fact,  hastily 
convened  ad  hoc  meetings  have  been  called  only  on  such  limited  issues  as  AIDS 
and  blood,  and  AIDS  in  monkeys  (simian  AIDS)  .  In  addition,  the  scientific 
ccmmunity  interested  in  AIDS  has  received  extremely  little  information  fran 
H.H.S.  to  assist  in  research  or  education.  As  an  invited  panel  member  and 
scientist  at  two  of  the  interagency  meetings  sponsored  by  the  CDC,  NIH  and  FDA 

(AIDS  and  Blood) ,  I  have  receive  no  follow-up  reports,  no  research  documents — 
in  fact  no  information  viiatsoever  following  the  meetings.  Indeed,  I  have  had 
to  purchase  a  subscription  of  the  CDC's  Morbidity  and  Mortality  Weekly  Report 

(MMWR)  for  myself.  Nor  have  I  received  a  single  issue  of  the  AIDS  update 
bulleting  announced  publicly  by  Secretary  Heckler.  Even  highly  publicised 

(through  press  conferences)  announceirent  of  "breakthroughs"  on  T-cell  viruses 
found  in  AIDS  patients  (at  NIH)  and  on  trials  with  Interleucin  2  (NIH  and  FDA) 
were  known  to  me  and  fellow  scientists  through  personal  contacts  and  national 
media,  rather  than  scholarly  cotnnunication  fran  the  agencies  releasing  the 
publicity. 

*for  identification  purpose  only 


157 


The  need  for  the  federal  government  to  develop  a  ccxrprehensive  master  plan 
and  to  convene  a  major  council  of  advisors  to  review  and  coment  upon  the  plan 
is  inperative.   The  master  plan  is  needed  in  order: 

1)  to  assure  that  all  conceivable  research  concepts  and  directions  are 
envisioned  and  enumerated  nCTv,  not  merely  a  list  hastily  ccnpiled,  or 
ones  ccnposed  mainly  of  fashionable  research  areas  currently  popular  in 
select  scientific  circles, 

2)  to  assure  prioritization  of  the  diverse  research  projects,  in  order  to 
see  that  our  best  leads  are  pursued  now  and  with  vigor,  and  also  to 
assure  that  long-term  projects  which  nay  take  several  years  to  corplete 
are  not  neglected.  We  dare  not  risk  playing  out  fashionable  leads,  seduc- 
tive because  of  their  attendant  publicity  and  celebrity  for  the  researchers 
carrying  them  out,  as  well  as  their  supporting  institutions,  only  to 
discover  two  or  five  years  fron  now  that  the  leads  were  dead  ends... only 
than  to  realize  we  should  have  begun  the  methodical,  long-term  research 
vdrLch  was  actually  needed.  We  can  always  terminate  long  term  projects 

if  serendi  pitous  short  term  work  finds  the  answers  we  seek;  we  can  never 
regain  the  the  lost  time  and  lost  lives  if  we  are  forced  to  begin  the 
traditional,  plodding  projects  at  the  end  of  a  period  of  unsuccessful 
attarpts  to  find  quick  results, 

3)  to  assure  that  each  of  the  many  projects  which  should  be  listed  be  period- 
ically and  systematically  scrutinized  anew,  as  fresh  infomation  and 
hypotheses  emeige  which  might  shift  our  perception  of  the  relative  signif- 
icance..  .either  upward  or  downward, 

4)  to  assure  close  examination  of  the  government's  AIDS  master  strategy  using 
the  same  creative  and  critical  peer  review  which  is  a  standard  procedure 
at  first-rank  scientific  journals  and  research  funding  institutions, 
including  all  branches  of  the  H.H.S.   We  cannot  afford  to  have  good 
hypotheses  tested  through  protocols  with  forseeable  limitations  or  flaws 
which  iright  have  been  avoided  or  circumvented, 

5)  to  coordinate  privately  funded  research  with  that  undertaken  by  the 
federal  government,  or  financed  by  it;  we  must  avoid  wasteful,  unwitting 
duplication  of  efforts  and  the  consequent  wasting  of  resources  of  mney 
and  time. 


26-097  0-83 11 


158 


6)  tx3  coordinate  studies  at  other  governmental  levels,  including  recent 
coimitments  made  by  the  City  of  San  Francisco,  the  state  of  New  York, 
and  pending  in  the  state  of  California, 

7)  to  develop  a  budget  for  AIDS  research  authentical ly  tailored  to  meet 
the  financial  requiranents  generated  by  a  corprehensive  master  plan, 
rather  than  invented  to  fall  within  the  Mministration '  s  policy  of 
frozen  social  service  funding. 

In  the  absence  of  the  fedbral  leadership  so  badly  needed  in  the  form  of 
such  a  master  plan  and  its  correlated  budges,  we  have  seen  more  than  two  years 
of  fragmented  and  ill  coordinated  research  conducted  on  AIDS.  The  consequence 
is  that  a  cure  or  preventive  procedijre  for  AIDS  evades  us  and  the  cause  of  AIDS 
remains  conpletely  unknown  to  us. 

Lacking  a  master  plan  acccmpanied  by  a  realistic  cost  analysis,  the 
Administration  continues  to  resists  budgetary  increases  for  AIDS.  Bihas 
repeatedly  danurred  to  Congressional  suggestions  of  additional  funding  for  medical 
research  on  AIDS.  Fortunately,  Congress  has  taken  steps  to  add  about  $12,000,000 
to  the  AIDS  budget.  The  fact  is,  however,  funds  vastly  greater  than  any  included 
in  proposals  so  far  heard  fron  the  government  are  manifestly  needed  if  one  even 
considers  a  few  of  the  many  projects  v*iich  woiild  be  essential  in  a  master  plan. 

For  example,  in  order  even  to  begin  the  long  process  of  systematically 
identifying  the  transmissible  agent  believed  to  cause  AIDS,  we  first  must  find 
and  experimental  animal  vMch  is  susceptible  to  AIDS.  We  need  to  be  able  to 
introduce  a  suspected  causal  fluid  or  tissue  fron  soneone  with  AIDS  into  the 
experimental  animal  to  see  if  it  does  indeed  cause  AIDS  inttie  animal... a  part 
of  the  celebrated  "Koch's  Postulates"  taught  every  beginning  student  of  biology 
or  medicine.  Only  in  this  way  can  we  be  sure  we  have  identified  the  correct 
causal  agent,  even  if  we  have  used  sophisticated  new  techniques  to  bypass  much 
traditional  procediore  for  discovering  a  causal  agent.  We  must  do  this  even  if 
we  have,  for  instance,  the  strongest  suspicion  that  a  particular  virus  rray  be 
the  cause  of  AIDS. 

Once  a  suitable  experimental  animal  is  located,  it  will  be  possible 
to  test  suspected  agents.  A  lucky  breakthrough  might  occur  this  way.  More 


159 


likely  to  be  the  case,  and  more  laboriously,  if  no  such  quick  breakthrough 
occurs,  test  animals  can  be  used  to  see  if  fluids  and  tissues  frcm  those  with 
AIDS  induce  the  disease  in  the  animals.  In  this  fashion  we  can  see  whether 
blood,  saren,  Kaposi  tumour  tissue,  etc.,  carry  AIDS,  and  then  begin  to  analyze 
vdiat  part  of  sorien,  for  exanple,  carries  the  causal  agent.  Or  if  blood  is 
found  to  be  a  najor  carrier  of  the  infectious  agent,  we  can  see  if  it  is  in 
(or  associated  with)  the  plasT\a,or  the  vdiite  cells,  or  the  red  cells.  Is 
it  a  small  molecule  \*iich  will  diffuse  through  membranes?  is  it  a  protein? 
a  virus-size  particle?  is  it  heat  labile?  susceptible  to  treatment  with 
urea  or  to  pH  changes,  or  to  enzymatic  ijiactivation?  Each  question  can  be 
answered  by  testing  the  purified  or  treated  blood  product  in  an  experimental 
population  of  animals. 

Testing  of  standard  laboratory  animals  such  as  hamsters,  mice,  rabbits, 
for  their  AIDS  susceptibility,  has  failed  so  far.  Therefore  we  must  test  as 
many  different  primate  species  as  possible,  because  of  their  far  greater 
medical  and  physiological  similarity  to  human  beings.  There  is  no  way, 
however,  to  predict  vfcich  speci=s  of  primate  will  be  susceptible,  or  even  if  any 
will  be.  Ftirthermore,  we  must  test  each  for  as  long  as  two  years  inasmuch  as 
in  humans,  AIDS  incubates  close  to  that  duration  on  the  average  before  it 
manifests  itself.   If  the  period  in  primates  proves  as  long  as  in  humans,  experi- 
mental primate  research  will  be  both  very  slow  and  very  costly.  We  must  start  now. 

According  to  several  different  sources  at  CDC  and  at  American  primate 
centers,  rhesus  monkeys  and  chirrps,  for  exanple  cost  about  $100  per  day  to 
house  and  to  care  for  in  research  such  as  we  will  need  for  AIDS  studies.  To 
intravenously  expose  twenty- five  animals  in  each  of  six  species  of  primates, 
with  blood  from  AIDS  patients,  and  to  house  them  for  two  years,  cones  to 

$10,950,000  [25  X  6  X  2  X  365  X  $100] 

To  test  just  five  other  body  fluids  and  tissues  besides  blood,  e.g.,  saliva, 
semen,  tumour  tissue  and  fecal  material  and  iirine,  would  be  six  times  more: 
$65,700,000  [$10,950,000  X  6] 

Since  we  are  imclear  vAiat  route  of  introduction  of  the  test  materials  into  the 
animal  would  work,  merely  testing  three  routes ...  intravenous ,  intramuscular  and 
intraperitoneal  injection. . .would  cause  the  cost  to  soar  another  threefold  to 
$197,000,000 


160 


This  staggering  figure  is  iterely  a  liniital  array  of  tests  designed  cnly  to 
discover  a  susceptible  species  of  animal... so  the  real  research  can  begin. 
[Note  that  AIDS  cCTitamination  of  animal  housing  facilities  in  these  studies 
may  well  render  them  unsuitable  for  future  use.] 

The  fact  is  that  the  cost  of  this  single  project  is  nearly  twenty  times 
the  entire  budget  the  Administration  has  until  recently  been  proposing  for 
all  AIDS  research. 

The  cost  of  experinental  testing  of  inter leucin  2,  to  consider  another 
exanple,  to  determine  if  it  is  a  useful  treatment  drug  for  AIDS,  is  reportedly 
$125,000  per  patient.  The  NIH  is,  I  understand,  testing  only  four  patients. 
A  full  scale  test  might  be  of  the  order  of  fifty  patients,  if  their  is  sufficient 
purified,  isolated  inter leucin  2  to  do  the  studies.  At  the  stated  price,  the 
cost  of  such  a  study  will  be  about  $6,000,000,  inasmuch  as  we  cannot  justify 
waiting  many  additional  months  in  the  hopes  that  'synthetic'  recanbiant  process 
inter leucin  2  will  be  available  presently  at  a  cheaper  cost  per  patient. 

Callous  as  raw  econonics  can  seen,  solving  the  AIDS  m^'stery  is  plainly 
cost-effective  ccrpared  with  the  price  of  hospital  care  alone,  which  now 
approaches  $100,000  per  case.  The  number  of  Icnown  AIDS  cases  nearly  doubles 
every  six  months.  AIDS  has  befen  around  at  least  three  years;  projecting 
forward  a  similar  periods  of  three  years,  to  1986,  we  can  expect  at  least  50,000 
AIDS  cases.  By  the  end  of  that  period,  the  national  AIDS  treatment  bill  will  be 
over  $5,000,000,000  --  five  billion  dollars. 

In  talking  with  numerous  research  scientists,  both  within  the  government 
and  in  the  private  sector,  I  find  they  aree  with  my  analysis  presented  here. . . 
the  desparate  need  for  a  federal  master  plan  and  for  the  level  of  financial 
resources  I  have  given  a  small  indication  of  here.  Sadly,  most  of  my  colleagues 
are  unwilling  to  cans  forward  to  state  their  support  and  concurrence  publicly. 
Those  in  government  quite  reasonably  fear  quick  termination  of  their  government 
careers  if  they  state  their  considered  scientific  beliefs  in  the  face  of 
explicit  govemitent  gag  orders.  University  researchers  equally  clearly  tell 
ne  that  they  fear  governmental  reprisal  if  they  appear  before  these  hearings 
or  speak  their  minds.  These  wanen  and  men  are  dependent  upon  government 
research  grants  in  order  out  their  scientific  research. . .the  sort  of  work  that 
has  won  Anerica  so  many  Nobel  Prises  and  made  us  preeminent  in  science  and  tech- 
nology. 


161 


All  these  realities  lead  me  to  the  conclussion  that  a  more  iirpartial 
authority  than  the  current  Administration  is  needed  to  create  a  iraster  plan 
for  AIDS  research  and  to  attach  realistic  costs  to  the  plan.  We  may  in  fact 
need  an  AIDS  counterpart,  crash-program  similar  to  the  Manhattan  Project  of 
the  1940's. 

Ttie  National  Acadany  of  Science  was  created  by  President  Lincoln  a 
century  ago  to  do  just  this  kind  of  work  —  advise  the  government  on  matters 
of  science.  The  Nationl Acadany ,  the  Institute  of  Medicine  or  the  American 
Public  Health  Association  should  be  asked  to  review  the  issues  and  recontiend 
a  ccnprehensive,  de-politicized  plan  of  action  and  assign  a  properly  prepared 
budget  recatmendation  for  it. 

It  is  my  belief  that  unless  such  steps  are  taken  hundreds  of  thousands  of 
Americans  and  people  around  the  world  will  be  killed  needlessly  and  inexcuseably 
by  AIDS. 


CPMTACT:   Dr.  Bruce  Voeller 

The  Mariposa  Foundation 
1800  N.  Highland  Ave. 

Suite  202 
Los  Angeles,  CA  90028 

(213)  469-3574 


162 

Mr.  Weiss.  Dr.  Bove. 

STATEMENT  OF  DR.  JOSEPH  R.  BOVE,  PROFESSOR  OF  LABORA- 
TORY MEDICINE,  YALE  UNIVERSITY  SCHOOL  OF  MEDICINE, 
AND  DIRECTOR,  BLOOD  BANK,  YALE-NEW  HAVEN  HOSPITAL 

Dr.  Bove.  Thank  you. 

Mr.  Chairman  and  members  of  the  committee,  I  am  Joseph  R. 
Bove,  M.D.,  professor  of  laboratory  medicine  at  Yale  University 
School  of  Medicine  and  director  of  the  blood  bank  at  the  Yale-New 
Haven  Hospital. 

I  have  devoted  all  of  my  professional  life  to  blood-banking  and 
transfusion  practice,  and,  among  other  things,  chair  both  the  Food 
and  Drug  Administration's  Advisory  Committee  on  Blood  and 
Blood  Products  and  the  American  Association  of  Blood  Banks  Com- 
mittee on  Transfusion-Transmitted  Diseases. 

As  you  might  imagine,  much  of  my  recent  medical  effort  has 
been  devoted  to  AIDS  and  its  effect  on  our  blood  banks  and  trans- 
fusion recipients.  I  will  be  brief  with  my  statement  so  that  your 
questions  can  focus  on  whatever  may  be  of  specific  concern  to  you. 

First,  let  me  address  one  area  that  seems  to  be  of  major  interest 
to  nearly  everyone:  Has  AIDS  contaminated  our  blood  supply?  As 
of  July  11,  1,831  cases  of  AIDS  had  been  reported  to  the  CDC 
United  States  only.  Of  these,  71  percent  were  in  gay  males,  17  per- 
cent in  IV  drug  users,  5.4  percent  in  Haitian  entrants,  0.8  percent 
in  hemophiliacs,  and  5.8  percent,  or  107  cases,  in  individuals  with 
no  apparent  risk  factors. 

To  the  best  of  my  knowledge,  this  latter  group  includes  fewer 
than  20  individuals  who  have  received  blood  transfusions  and  have 
come  down  with  AIDS.  In  one  case,  and  one  case  only,  has  the  epi- 
demiologic investigation  identified  a  donor  with  AIDS.  In  several 
other  cases— still  under  investigation— there  are  suspect  donors, 
but,  as  far  as  I  know,  in  only  this  one  case  is  a  transfusion  recipi- 
ent with  AIDS  linked  to  a  donor  with  AIDS.  Thus,  the  current  total 
of  transfusion-related  AIDS  cases  is  fewer  than  20,  with  only  1  in 
which  an  AIDS  donor  is  linked  to  an  AIDS  recipient. 

The  current  AIDS  epidemic  began  in  late  1979  or  early  1980.  In 
1980,  the  latest  year  for  which  there  are  data,  10,880,079  units  of 
blood  were  collected  from  volunteer  donors  and  transfused  into 
3,271,792  recipients. 

I  have  no  reason  to  believe  that  the  numbers  for  1981,  1982,  or 
1983  differ  significantly,  so  we  can  assume  with  confidence  that 
over  10  million  persons  have  received  over  30  million  units  of  vol- 
unteer blood  since  the  AIDS  epidemic  began.  In  this  vast  experi- 
ence the  number  of  transfusion-related  cases  is  under  20.  If— and 
there  is  no  evidence  yet  that  this  is  so— but  if  all  20  cases  under 
investigation  by  CDC  finally  turn  out  to  be  transfusion-related,  the 
incidence  will  be  less  than  1  in  a  million.  We  do  not  know  that 
AIDS  can  be  spread  by  transfusion,  but  that  possibility  cannot  be 
discounted. 

But  if  AIDS  can  be  spread  by  transfusion,  what  we  know  now 
suggests  that  the  risk  is  minimal.  Much  less  than  the  risk  of  many 
other  well-known  and  accepted  risks  associated  with  transfusion, 


163 

with  medical  practice  and  with  life,  itself.  Some  of  these  are  de- 
tailed in  the  appended  table. 

Over  the  past  20  years  our  blood-collecting  agencies — the  Ameri- 
can Association  of  Blood  Banks,  the  American  Red  Cross,  and  the 
Council  of  Community  Blood  Centers— have  worked  together  to  de- 
velop the  very  fine  system  of  voluntary  blood  banks  that  serves  the 
American  public.  Over  98  percent  of  all  blood  transfusions  now 
come  from  volunteer  blood  donors.  The  system  is  working  and 
working  well. 

Even  if— and  it  still  is  a  big  if— a  small  number  of  AIDS  cases 
turn  out  to  be  transfusion  related,  I  do  not  believe  that  this  can  be 
interpreted  to  mean  that  our  blood  supply  is  contaminated.  Prob- 
ably not,  and  if  not,  what  has  caused  the  problem  facing  our  blood 
banks? 

First  and  foremost  is  the  element  of  hysteria  that  surrounds  the 
disease  and  anything  even  remotely  related  to  it.  In  my  view,  this 
hysteria  is  fueled  partly  by  an  overreacting  press  and  partly  by  a 
paucity  of  public  information  about  the  exact  nature  and  number 
of  suspected  transfusion-related  cases.  In  a  setting  where  the 
amount  of  information  is  limited,  rumor  and  anxiety  run  rampant. 
This  anxiety  has  produced  a  whole  host  of  unfortunate  conse- 
quences. In  some  areas — certainly  not  in  all,  and  probably  only  in  a 
few — significant  blood  shortages  are  being  seen.  We  cannot  be  sure 
these  are  AIDS  related,  but  there  is  a  suspicion  that  they  are.  Po- 
tential recipients  and  their  families  are  beginning  to  fear  transfu- 
sion and,  in  some  instances,  are  resisting  appropriate  medical 
treatment  because  of  these  fears. 

There  has  been  pressure  on  blood  banks  to  allow  patients  to 
select  their  own  donors  rather  than  relying  on  the  community  re- 
sources. Such  requests  have  the  potential  to  undermine  a  fine  vol- 
unteer system  to  the  point  where  it  might  no  longer  be  able  to 
supply  the  blood  needs  of  most  patients  who  require  transfusion. 
The  collecting  agencies  have  recognized  this  and  taken  a  strong  po- 
sition against  such  directed  donations. 

Our  blood  banks  are  mindful  of  the  heavy  responsibility  they 
shoulder  for  a  safe  blood  supply.  To  this  end,  they  have  quickly  and 
willingly  implemented  the  FDA's  suggestion  to  provide  all  poten- 
tial blood  donors  detailed  information  about  groups  at  high  risk  of 
AIDS  and  ask  individuals  in  any  of  these  groups  to  refrain  volun- 
tarily from  donation.  If  there  had  been  even  a  small  risk  of  trans- 
fusion-transmitted AIDS  in  the  past,  these  measures,  in  place  since 
late  March,  should  lower  it  even  further. 

I  am  in  a  difficult  and  delicate  position.  We  are  dealing  with  a 
highly  fatal  disease  of  unknown  cause  which  is  spread  in  ways  we 
do  not  understand.  Much  about  the  disease  suggests  that  it  is  an 
infectious  illness  caused  by  an  unidentified  agent. 

There  is  no  test  for  AIDS  and  no  way  to  know  who,  if  anyone,  is 
a  carrier.  In  this  forest  of  unknowns,  a  few  people  who  have  had 
transfusions  have  also  come  down  with  AIDS.  This  may  be  coinci- 
dence, but  it  seems  possible  that  in  an  occasional  case  the  two 
events  are  related.  We  really  do  not  know. 

Our  needs  now  are  to  be  calm  and  realistic  in  appraising  the 
medical  situation;  to  take  whatever  new  steps  are  needed  when, 
and  only  when,  they  can  be  justified  on  medical,  scientific,  and  epi- 


164 

demiologic  grounds;  to  continue  to  support  and  nurture  the  volun- 
teer blood  bank  system  and  to  reassure — as  best  we  can — those  who 
need  transfusion. 

We  look  to  CDC  for  ongoing  up-to-date  information  on  which  we 
can  base  future  decisions  about  the  Nation's  blood  supply;  to  NIH 
for  research  leadership  and  support;  to  FDA  for  whatever  regula- 
tory authority  may  be  needed;  and  to  the  Congress,  ladies  and  gen- 
tlemen, for  financial  and  emotional  support,  financial  in  the  sense 
that  the  ultimate  solution  to  the  AIDS  problem  will  require  re- 
search and  medical-care  dollars,  and  emotion — if  that  is  the  right 
word — so  that  the  public  can  look  to  the  Hill  and  see  clearcut,  un- 
ambiguous support  for  America's  volunteer  blood  bank  system. 

I  thank  you  for  this  opportunity  to  appear  before  your  committee 
and  am  pleased  to  answer  any  questions  you  may  have. 

[The  table  entitled  "Societal  and  Medical  Risks,"  follows:] 


165 


SOCIETAL  AND  MEDICAL  RISKS 


Transfusion  Related  Risks 

Transfusion  transmitted  AIDS 
Transfusion  transmitted  hepatitis 
Transfusion  transmitted  malaria 
Death  from  the  wrong  unit  of  blood 


1:1,000,000  (perhaps) 
5-7%  of  all  recipients 
1:1,000,000 
1:500,000 


Medically  Related  Death  Rates 

Appendectomy 
Tonsillectomy 
Cholecystectomy 
Hernia  Repair 
Dilatation  and  Curettage 


1 


5,000 

10,000 

625 

5,000 

580 


General  Risks  (Death/Person/Year)' 

Automobile  racing 

Professional  boxing 

Motorcycling 

Struck  by  automobile 

Earthquake  (California) 

Floods 


10,000 

14,300 

50 

16,600 

588,000 

455,000 


1.  Hospital  Mortality.  PAS  Hospitals,  United  States  1974-75, 

2.  Dinman  BD.  JAMA  1980;244:1226-1228. 


166 

Mr.  Weiss.  Thank  you  very  much,  Dr.  Bove.  I  want  to  thank  all 
of  you  on  this  panel.  It  was  extremely  important  and  informative 
testimony. 

We  are  now  going  to  break  for  about  a  half  an  hour. 

The  cafeteria  is  still  open  and  will  remain  open  until  2:30;  so  it 
will  allow  for  some  replenishment.  We  will  then  resume  our  activi- 
ties at  2:45  p.m. 

Hopefully,  you  can  all  return  for  questions  at  that  time,  and  we 
will  complete  the  afternoon's  activities  with  the  last  remaining 
panel. 

Thank  you. 

The  committee  stands  in  recess  until  2:45  p.m. 

[Whereupon,  at  2:10  p.m.,  the  subcommittee  recessed,  to  recon- 
vene at  2:45  p.m.  the  same  day.] 

AFTERNOON  SESSION 

Mr.  Weiss.  The  subcommittee  will  come  to  order,  and  if  all  of  our 
witnesses  on  this  panel  will  resume  their  place  at  the  witness 
table,  we  will  proceed. 

First,  let  me  apologize  for  keeping  you  longer  by  breaking,  but  I 
was  afraid  if  we  did  not,  and  the  questions  ran  over,  there  would  be 
no  occasion  for  lunch,  because  the  cafeteria  closes  at  2:30. 

I  do  appreciate  your  cooperation  and  your  returning. 

Dr.  Bove,  let  me  address  a  question  to  you,  if  I  may. 

What  steps,  in  the  light  of  your  testimony,  do  you  feel  need  to  be 
taken  to  allay  public  concern  about  the  Nation's  blood  supply? 

Dr.  Bove.  Information,  sir;  information.  I  think  we  need  an  on- 
going and  open  line  of  information  from  the  CDC,  which  is  current- 
ly the  locus  from  which  the  case  reporting  stems  to  the  public.  I 
think  those  of  us  who  are  in  the  blood-collecting  industry,  who 
have  responsibility  for  the  Nation's  blood-collecting  systems,  need 
to  know  exactly  how  many  suspected  cases  there  are,  where  they 
are,  and  at  what  stage  the  investigation  is. 

Do  we  have  suspect  donors?  I  think  that  information  ought  to  be 
available  not  only  to  us  in  the  blood-collecting  group,  but  to  the 
public.  This  is  really  public  health  information,  and  I  think  the 
people  of  this  country  need  to  know  as  quickly  as  possible  what  our 
CDC  knows  about  the  risks. 

Mr.  Weiss.  Why  do  you  believe  that  information  has  not  been 
forthcoming? 

Dr.  Bove.  I  can't  answer  that.  Congressman.  I  think  you  have  to 
ask  others,  but  I  know  that  there  is  a  feeling  on  my  part,  and  I 
suspect  on  the  part  of  others,  that  the  kind  of  openness  about  the 
information  we  think  we  need  has  not  been  available  from  CDC. 

Mr.  Weiss.  One  of  you,  though  I  don't  know  who,  testified  that 
the  Morbidity  and  Mortality  Weekly  Report  was  changed  from  a 
free  distribution  to  a  paid-for  distribution,  and  I  gather  from  the 
testimony  that  this  was  done  to  comply  with  budget  restraints. 

It  is  your  judgment  that  the  same  problems  may  be  present  in 
getting  all  kinds  of  information  from  CDC? 

Dr.  Bove.  I  really  am  not  competent  to  answer  that  question. 
You  better  ask  the  CDC  people. 

Mr.  Weiss.  Well 


167 

Dr.  BovE.  The  Morbidity  and  Mortality  Weekly  Report  is  still 
out,  still  published  every  week,  and  there  is  an  opportunity  for 
CDC  to  write  and  publish  in  that  information  about  suspected 
cases,  just  as  they  talk  about  measles,  mumps,  and  chicken  pox. 
They  could  certainly  tell  us  about  the  suspected  transfusion  cases. 

Mr.  Weiss.  When  Mr.  Brownstein  testified  earlier,  the  impression 
I  got  from  his  testimony  was  that  he  felt  that  organizationally,  the 
National  Hemophilia  Foundation  was,  in  fact,  being  reached  out  to 
by  the  CDC. 

I  guess  what  you  are  saying  is  that  whatever  information  they 
give  NHF  may  be  in  the  very  narrow  area  of  their  concern,  but  as 
far  as  broader  information  is  concerned,  to  allow  you  to  do  your 
work,  that  information  is  not  available? 

Dr.  BovE.  I  feel  that  is  correct,  sir. 

I  learned  this  morning  the  CDC  is  supplying  the  National  Hemo- 
philia Society  on  an  ongoing  basis  about  a  number  of  cases  of  he- 
mophilia and  details  about  them  that  are  suspected  and  related  to 
transfusion  of  blood  products,  but  the  three  major  blood-collecting 
organizations  have  not  received  that  information. 

Now  that  I  have  learned  that  it  is  available,  I  will  see  if  I  can  get 
it;  but  why  did  I  have  to  learn  it  here  this  morning  in  this  way? 

Mr.  Weiss.  All  of  you  have  referred  in  one  way  or  another  to 
what  seems  to  be  a  lack  of  a  comprehensive  approach  to  dealing 
with  this  problem. 

Would  any  of  you  care  to  offer  some  suggestions  as  to  what  you 
think  ought  to  be  done;  how  can  we  get  a  better  coordinated  ap- 
proach to  deal  with  this  problem? 

Dr.  Conant? 

Dr.  Conant.  Yes,  sir,  and  I  think  there  are  a  number  of  different 
ways.  It  would  seem  a  problem  of  this  magnitude  involving  as 
many  different  aspects  of  our  society  as  it  does,  and  it  will  continue 
to  involve  more  aspects  of  society. 

We  learned  last  week  that  there  is  now  an  indication  that  health 
care  workers  have  acquired  the  immune  deficiency  syndrome  from 
dealing  with  patients. 

Questions  will  be  raised  about  the  safety  of  doing  cardiopulmon- 
ary resuscitation  on  people  who  may  be  suffering  from  AIDS,  and 
so  there  are  going  to  be  a  variety  of  different  issues  arising  in  the 
immediate  future  that  need  to  be  addressed. 

We  should  have  contingency  plans  how  we  will  educate  the 
public  and  deal  with  those  problems  as  each  arises  in  turn. 

I  would  think  that  a  blue-ribbon  overseer  committee,  answerable 
to  the  executive  branch  of  Government,  perhaps  HHS,  which  could 
look  at  the  various  issues  that  will  arise  because  of  this  epidemic, 
and  assay  what  is  available  in  the  community  to  respond  and  come 
up  with  plans  so  the  Government  could  respond  quickly,  could  be 
appropriate. 

We  have  watched  the  spectre  of  a  2y2-year  wait  to  get  funding 
for  research.  Some  of  the  issues  that  could  arise  regarding  this 
problem,  we  cannot  wait  IV^  years,  and  I  would  see  this  overseer 
committee  looking  at  not  only  informational  areas — the  public 
need  areas — but  also  the  research  areas  as  well. 

We  heard  the  other  day  that  a  young  man  in  the  military  had 
been  summarily  discharged  without  medical  benefits  because  he 


168 

had  developed  AIDS.  It  was  suggested  that  he  acquired  the  disease 
through  his  own  misconduct.  I  don't  need  to  remind  you  gentlemen 
that  we  have  Veterans  Administration  hospitals  full  of  individuals 
who  are  there  because  they  smoked  for  many,  many  years.  They 
acquired  chronic  lung  disease,  and  alcoholism  was  mentioned  earli- 
er. 

If  a  young  man  is  in  a  motorcycle  accident  while  on  active  duty 
and  drinking,  he  is  cared  for  by  the  military.  This  man  is  being  de- 
prived medical  benefits  because  he  was  summarily  discharged  with 
the  argument  being  he  got  this  through  his  own  misconduct. 

In  all  probability  his  attorney  will  be  able  to  get  that  overthrown 
in  2  or  3  years.  He  needs  medical  benefits  now.  He  will  be  dead  in 
2  or  3  years.  There  are  a  whole  variety  of  issues  exactly  like  this, 
where  some  overseer  committee  responding  to  this  emergency 
could  be  extremely  useful. 

Dr.  VoELLER.  I  think  it  is  essential  there  either  be  standing  or  ad 
hoc  advisory  committees  from  outside  the  Government  to  CDC, 
FDA,  and  NIH  on  AIDS  in  general,  just  as  there  were  to  some 
extent  with  Federal  panels  which  met  two  different  times  concern- 
ing AIDS  and  blood,  a  year  ago  now  and  back  on  January  4.  Two  of 
us  here  served  on  those  panels. 

There  is  a  need  to  have  panels  of  outside  people  who  can  help 
focus  and  hone  plans  and  bring  in  new  thoughts  and  ideas  to  re- 
search programing.  I  repeat  that  I  think  that  the  most  fundamen- 
tal thing  of  all  goes  beyond  that;  it  is  the  need  to  have  a  politically 
independent  voice,  from  people  who  are  competent  scientists,  for 
an  overall  master  plan  that  probably  can  only  be  developed  by 
some  such  agency  as  the  National  Academy  of  Science  or  the 
American  Public  Health  Associations,  as  I  mentioned  earlier. 

Only  through  that,  then,  can  we  turn  to  a  properly  conceived 
budget,  not  plans  drawn  by  political  necessities  or  points  of  view  of 
the   administration   on   the   relative   importance   of  the   defense 
budget  versus  health  and  human  services  budgets. 
Mr.  Weiss.  Dr.  Siegal? 

Dr.  Siegal.  I  would  like  to  comment  on  a  need  for  redundancy 
and  investigation  in  this  and  other  diseases.  We  should  not  forget 
the  importance  of  serendipitous  observations  in  what  should  be  ob- 
vious to  anybody  who  knows  anything  about  the  real  process  of  sci- 
ence. 

I  don't  think  that  a  close  finger  on  how  research  is  done  by  a 
steering  committee  and  who  does  it,  and  in  what  type  framework, 
is  necessarily  an  approach  to  be  handed  down. 

Mr.  Weiss.  You  are  not  saying  that  we  ought  not  to  make  sure 
that  the  effort  is  sufficiently  well  organized,  so  that  we  know  that 
each  area  of  research  is,  in  fact,  being  undertaken,  or  are  you? 

Dr.  Siegal.  No,  no.  I  think  that  it  is  important  to  have  a  general 
plan  of  attack.  It  is  clear  that  we  ought  to  know  that  the  areas  of 
importance  are  being  covered  and  questions  that  need  to  be  ad- 
dressed are  being  addressed,  but  to  narrowly  take  that  to  mean 
that  only  one  individual  laboratory  should  pursue  a  particular  per- 
spective, I  think,  would  be  a  mistake. 
Dr.  Voeller.  I  agree. 

Dr.  Krim.  I  would  enlarge,  approve  strongly  what  Dr.  Siegal  just 
said.  In  research,  a  certain  amount  of  duplication  is  good  and  nee- 


169 

essary,  because  no  two  people  approach  the  same  problem  exactly 
the  same  way,  and  confirmation  of  results  is  always  necessary. 

One  has  to  come  to  the  same  results  two  and  three  times  before 
they  become  completely  reliable,  and,  it  is  better  if  confirmation  is 
obtained  done  by  different  people. 

In  my  statement,  I  emphasized  that  Government  should  be  in- 
volved in  the  overall  planning,  but  not  go  into  the  specifics  of  the 
research.  The  latter  should  be  left  to  the  investigators  themselves; 
the  Government  should  make  sure  that  all  basic  areas  are  covered 
by  a  sufficient  number  of  laboratories,  and  that  certain  facilities 
and  resources  are  made  available  to  them.  There  is  a  need  for  a 
central  repository  for  clinical  specimens,  for  example,  because 
many  investigators  don't  have  access  to  patients.  Investigators 
should  be  able  to  write  to  somebody  and  say,  I  need  this  type  of 
blood  sample,  or  cell,  or  virus  probe,  and  the  Government  should 
help  make  these  available.  But  investigators  must  be  able  to  work 
independently  and  freely,  and  not  be  asked  to  verify  a  hypothesis 
formulated  by  others. 

Mr.  Weiss.  All  of  you  are  saying  basically  the  same  thing.  Thank 
you  very  much. 

Mr.  Walker.  Dr.  Bove,  I  would  like  to  get  a  couple  of  things  for 
the  public  record  here. 

Is  it  safe  to  have  a  blood  transfusion  in  this  country  today? 

Dr.  Bove.  In  terms  of  AIDS? 

Mr.  Walker.  Yes. 

Dr.  Bove.  As  far  as  I  know,  I  think  it  is.  That  is  my  professional 
opinion  right  now. 

Mr.  Walker.  Is  it  safe  to  give  blood? 

Dr.  Bove.  Absolutely;  unquestionably. 

Mr.  Walker.  Well,  I  think  it  is  important  that  we  establish  those 
two  things  with  an  expert  for  the  record,  and  I  thank  you  for  your 
statement  on  that. 

Dr.  Conant,  you  made  three  basic  points  earlier,  and  I  thought 
that  your  testimony  was  very  good.  There  was  one  thing  that  puz- 
zled me,  based  upon  my  own  reading  on  this,  as  to  how  it  relates, 
and  that  is — not  from  the  standpoint  of  what  you  said,  but  its  ap- 
plication to  AIDS — and  that  is  that  you  said  that  you  don't  think 
that  we  in  any  way  can  expect  in  the  context  of  dealing  with  this 
disease,  that  we  can  expect  anyone  to  cease  being  human  in  terms 
of  expressing  their  own  sexuality,  and  that  is  absolutely  a  fact.  I 
don't  disagree  with  that. 

However,  it  does  seem  to  me  that  the  expression  of  sexuality  in 
our  society  is  most  often  in  monogamous  types  of  relationships.  Is 
it  not  true  that  we  are  dealing  with  something  other  than  monoga- 
mous relationships  in  most  cases  and  dealing  not  just  in  terms  of 
dozens  of  different  sexual  liaisons,  but  in  the  case  of  many  of  the 
people  who  originally  contracted  this  disease,  we  are  dealing  with 
hundreds  of  different  sexual  liaisons,  which  is  hardly  an  expression 
of  sexuality  which  we  would  normally  think  was  healthy  in  any 
part  of  our  population? 

I  wish  you  would  deal  with  that  question. 

Dr.  Conant.  It  gives  me  an  opportunity  to  stress  a  point  that  we 
have  all  been  making  this  morning,  and  that  is  that  the  research 


170 

in  this  particular  case,  the  epidemiological  research,  has  not  been 
adequate. 

An  epidemiological  study  is  only  so  good  as  the  design  of  the 
study,  the  questions  you  are  asking  as  a  scientist,  and  the  time,  ap- 
pointed time,  at  which  you  do  the  study. 

As  you  heard  from  some  of  the  patients  this  morning,  the  CDC 
study,  unfortunately,  was  not  well  designed.  I  don't  know  whose 
fault  that  was.  It  may  be  that  we  were  dealing  with  a  new  history, 
but  it  was  not  well  defined  and  not  yet  even  been  published,  even 
though  it  was  done  in  the  fall  of  1981,  almost  2  years  ago. 

That  study  showed  that  the  people  coming  down  with  AIDS  at 
that  time  were  highly  promiscuous  men,  and  yet  I  can  tell  you,  as 
a  physician  who  sees  about  three  new  AIDS  patients  a  week  now, 
that  is  not  what  we  are  seeing  today.  We  are  seeing  men  who  are 
physicians,  nurses,  attorneys,  who  are  in  not  totally  monogamous 
relationships,  but  essentially  such,  and  we  are  seeing  large  num- 
bers of  them;  in  my  practice,  probably  50  percent  of  the  patients. 

I  had  a  patient  last  week,  a  young  man  28  years  old,  and  he 
came  in  and  said,  "I  think  this  is  Kaposi's  sarcoma,"  and  I  looked 
up  and  said,  "I  think  you  are  right.  We  will  take  a  biopsy  and  see." 

He  started  crying,  and  he  said,  I  jog  25  miles  a  week,  go  to  the 
gym  every  week;  I  only  had  sex  with  three  people  in  my  entire  life. 
How  could  this  happen  to  me?" 

Now,  the  point  I  would  like  to  make  here  is  that  if  we  had  done 
an  epidemiological  study  the  morning  after  Pearl  Harbor,  we 
would  assume  that  Japan  won  the  war.  We  need  to  do  ongoing  epi- 
demiological studies  as  this  disease  evolves,  look  at  who  is  at  risk, 
why  are  certain  people  getting  it? 

We  pointed  out  in  San  Francisco  we  have  the  largest  Asian  com- 
munity outside  of  Asia,  and  yet  there  have  been  only  four  cases  in 
Chinese,  Japanese,  or  Filipinos.  Their  sexual  behavior  is  no  differ- 
ent. 

So  we  need  funds  to  do  these  ongoing  epidemiological  studies. 

Mr.  Walker.  I  don't  disagree  with  that.  My  question  came  as  a 
response,  though,  to  your  point  that— I  gathered  from  your  points 
that  the  lifestyle  issue  should  not  be  considered  as  a  part  of  this, 
and  it  seems  to  me  that,  based  upon  the  evidence  we  now  have 
before  us,  we  cannot  totally  ignore  some  of  the  lifestyle  issues. 

Dr.  CoNANT.  We  have  to  consider  every  issue  that  presents  itself. 
Early  on,  the  men  we  were  seeing  were  very  promiscuous  men,  but 
we  are  not  seeing  that  today. 

Mr.  Walker.  You  made  a  reference  to  the  health  workers  that 
have  been  discovered  recently.  Do  you  have  any  evidence  that 
those  are  people  who  were  in  contact  with  AIDS  victims? 

My  understanding  of  that  was  that  the  health  workers  who  have 
come  down  with  AIDS  were  not  people  who  had  had  contact  with 
AIDS  victims. 

Do  you  have  different  information  on  that? 

Dr.  CoNANT.  I  can  give  you  the  information  published  in  the 
MMWR  last  week,  and  I  can  tell  you  what  we  know  from  our 
health-care  workers  at  the  University  of  California. 

They  cited  four  individuals  who  had  come  down  with  AIDS.  At 
least  one  of  the  four  cases,  the  man  as  far  as  the  CDC  can  tell,  had 
no  other  risk  factors.  He  was  not  gay,  not  a  hemophiliac,  not  a  Hai- 


171 

tian,  nor  a  drug  user.  He  worked  without  gloves  frequently  in 
areas  where  surgical  procedures  were  done,  and  he  did  report  a 
needle  stick  some  18  months  before  he  became  ill.  It  is  not  known 
that  that  needle  was  contaminated  with  blood  from  someone  who 
had  AIDS. 

He  developed  Pneumocystis  and  died  of  that  disease.  It  is  only  in- 
ferential; the  suggestion,  of  course,  is  that  he  was  inoculated  in 
some  way. 

The  reason  that  we  think  that  that  is  significant  is  that,  as  you 
heard  this  morning,  the  AIDS  epidemic  has  many  parallels  to 
hepatitis  B.  If  it  is  a  viral  agent,  it  would  appear  that  it  is  being 
transmitted  in  such  a  way  hepatitis  D  is.  Other  groups  that  are  at 
risk  for  acquiring  hepatitis  B  are  health-care  providers  and  physi- 
cians, who  do  procedures  without  using  gloves. 

We  would  not  be  at  all  surprised  to  see  an  occasional  health-care 
worker  who  did  acquire  AIDS  by  exposure  to  these  patients. 

Mr.  Walker.  Thank  you,  Mr.  Chairman. 

Mr.  Weiss.  Mr.  McCandless? 

Mr.  McCandless.  I  would  like  to  ask  the  panel,  as  a  whole,  this 
question: 

It  is  my  understanding  that  embarking  upon  an  experimental 
program  for  finding  an  ultimate  solution  is  a  building-block  proc- 
ess. As  you  begin  to  develop  the  necessary  basic  criteria,  more  and 
more  people  can  become  involved  in  trying  to  further  different 
paths  that  have  surfaced.  Whether  it  becomes  a  dead  end,  or  the 
ultimate  solution  each  path  is  further  broadened  until  finally  you 
have  a  breakthrough. 

Is  this  essentially  how  it  works,  or  do  we  have  the  wrong  impres- 
sion? 

Dr.  SiEGAL.  It  very  often  works  that  way,  but  many  of  the  most 
important  breakthroughs  that  have  occurred  in  biomedical  re- 
search have  been  sheer  accidents,  and  the  discovery  of  penicillin  is 
perhaps  the  best  example,  but  there  are  lots  of  others.  The  discov- 
ery of  the  hepatitis  B  was  the  result  of  an  accidental  observation 
by  someone  who  was  prepared  to  go  part  of  the  way  and  be  helped 
out  by  others. 

Dr.  VoELLER.  It  is  important  to  say  that,  too,  in  the  context  we 
are  talking  about,  we  all  hope  something  serendipitous  will 
happen,  that  some  lucky  break  will  occur.  But  we  can't  bank  on 
that  or  be  caught  3  years  from  now  with  50,000  or  more  people 
dead  from  AIDS,  not  having  taken  the  logical  steps  I  spoke  of  earli- 
er. 

I  think  it  is  important  not  to  limit  ourselves  with  the  hopes  that 
some  lucky  breakthrough  will  come  up,  because  we  may  end  up 
with  dead  ends,  even  though  sometimes  the  lucky  break  pays  off. 

Dr.  SiEGAL.  They  don't  happen  unless  there  are  enough  people 
looking. 

Mr.  McCandless.  My  concern  is  this  "Government"  tends  to  find 
answers  through  money,  in  the  sense,  that  if  we  throw  enough 
money  at  it,  we  will  ultimately  find  a  solution. 

My  Science  and  Technology  Committee  believes  if  we  spend 
enough  money  on  a  certain  type  of  design  for  a  wing,  we  will  come 
up  with  a  solution  to  the  problem.  People  tell  us  we  can  only  spend 
so  much  and  do  so  much  research  at  a  time. 


172 

In  this  particular  case,  it  would  appear  to  me  that  the  number  of 
available  resources  ultimately  simulate  research  but  are  somewhat 
limited  until  such  time  as  other  projects  or  activities  have  worked 
their  way  out  and  these  technicians  and  scientists  become  availa- 
ble. 

Is  that  correct? 

Dr.  Krim.  I  think  in  this  case — I  tried  to  say  this  in  my  state- 
ment— in  this  case  we  have  an  enormous  amount  of  expertise  out 
there,  in  several  areas — biology,  genetics,  immunology,  epidemiol- 
ogy— talent  available  and  willing.  Some  researchers  are  working  al- 
ready on  a  shoestring;  others  would  like  to  work  on  AIDS  but  have 
no  means  to  do  so  now. 

The  case  of  the  group  which  formed  the  AIDS  Medical  Founda- 
tion is  a  good  example.  We  wanted  to  continue  our  work,  and  we 
were  sinking  for  lack  of  financial  support  for  it. 

I  really  think  that  in  the  case  of  AIDS  research,  the  major  obsta- 
cle is  lack  of  money,  and  only  then  lack  of  a  certain  amount  of  or- 
ganizational talent  that  the  Government  can  provide;  but  money 
could  be  spent  very  quickly,  and  most  usefully. 

Also,  AIDS  is  a  problem  that  has  a  lot  of  different  facets.  It  is 
not  one  narrow  problem  where  one  can  go  only  one  step  at  a  time. 
There  is  a  range  of  things  one  can  start  doing  immediately  in  dif- 
ferent areas,  and  many  avenues  of  research  can  usefully  be  carried 
out  in  parallel. 

Dr.  CoNANT.  I  share  with  you  your  concern  that  the  hysteria 
around  this — we  will  make  this  go  away  by  throwing  enough 
money  at  it,  and  we  will  quickly  get  the  answer,  and  the  whole 
problem  will  go  away — all  of  us  understand  that  that  is  not  the 
case.  If  you  don't  put  enough  money  there  to  do  the  necessary  re- 
search, we  will  never  get  the  answers  that  we  need  to  stop  this 
problem. 

At  our  institution,  for  example,  which  has  done  a  great  deal  of 
research  on  this  problem,  our  leading  cancer  virologists  had  speci- 
mens from  patients  with  AIDS  and  was  beginning  to  do  work  on 
animal  models  to  try  to  see  if  he  could  isolate  the  virus.  It  was  ap- 
propriate; the  university  became  concerned  that  the  centrifuge  he 
was  using  would  become  contaminated;  and  so,  from  November 
1982  until  we  got  funding  in  May  1983,  that  tissue  sat  there  fallow 
with  nothing  being  done  because  we  did  not  have  one  $30,000  cen- 
trifuge. 

The  State  of  California  last  month  voted  $3  million  to  supple- 
ment the  research  that  we  are  prepared  right  now  to  do,  but  we 
cannot  find  funding  at  the  national  level;  so,  while  I  agree  with 
you  that  you  could  throw  too  much  money  at  it,  and  it  could  be 
wasteful,  a  certain  amount  of  money — and  I  am  afraid  that  is  going 
to  be  a  large  amount  of  money — is  going  to  be  necessary  if  we  are 
going  to  find  an  answer. 

Mr.  McCandless.  One  other  point  here,  if  I  may,  Mr.  Chairman. 

Our  public  health  figures  in  the  various  categories  show  in  fiscal 
year  1983  we  will  have  spent  $14,532,000  in  this  field. 

If  I  understand  correctly,  there  has  been  no  central  coordination 
or  an  information  bank  set  up  from  which  information  can  be  dis- 
seminated. If  it  were,  all  parties  involved  could  benefit  from  it  in 
their  research. 


173 

I  think  the  terminology  is,  you  have  not  had  any  kind  of  scientif- 
ic meeting  on  this  at  the  national  level.  Is  this  correct? 

Dr.  VoELLER.  Two  things — yes,  you  did — first,  there  is  no  master 
plan. 

There  are  bits  of  research  being  done  in  different  laboratories, 
both  in  the  private  sector  and  in  the  governmental  sector  at  the 
NIH,  et  cetera,  but  there  is  no  master  plan  that  has  been  developed 
and  publicly  put  forward  by  the  Government  which  people  from  all 
the  different  sectors  then  could  relate  to  in  planning  and  strategiz- 
ing  what  they  wish  to  do. 

When  I  say  a  master  plan,  I  don't  mean  it  will  be  dictated  or 
overseen  by  the  Government  to  make  sure  everybody  is  doing  exact- 
ly what  is  supposed  to  be  done,  but  rather  a  listing  of  the  things 
which  we  ought  to  be  attending  to  and  different  quarters  ought  to 
be  conducting  those  at  this  point.  We  need  a  general  battle  plan  to 
wage  a  successful  war. 

An  example  of  what's  missing:  a  notion  to  which  we  have  only 
given  lip-service — is  raising  the  funds  and  conducting  the  experi- 
ments needed  to  get  a  primate  animal  model  to  use  for  further  re- 
search. 

The  answer  to  the  second  part  of  your  question  is,  as  an  example 
of  it.  Dr.  Bove  and  I  both  served  on  the  two  blood  and  AIDS  panels 
held  by  the  Government,  as  invited  guests  of  the  three  governmen- 
tal agencies,  and  neither  of  us  has  received  any  followup  reports 
whatever.  We  have  not  even  received  the  update  bulletin  that  Sec- 
retary Heckler  announced  would  be  put  out  on  AIDS,  and  indeed,  I 
had  to  subscribe  on  my  own  to  the  MMWR  published  by  the  CDC, 
as  was  mentioned. 

We  have  gotten  no  information  whatsoever,  even  as  members  of 
a  Federal  panel  working  with  the  agencies. 

Other  people  are  in  equally  bad  or  worse  positions  because  we  at 
least  have  contacts  through  our  meetings,  so  we  can  put  in  a  tele- 
phone call  and  say,  what  should  I  know?  What  has  happened?  But 
the  rest  of  the  people  in  the  field  are  dependent  upon  published  re- 
sources and  repeatedly  seeing  press  conferences  held  by  members 
of  Government,  or  elsewhere,  to  publicize  research. 

Mr.  McCandless.  You  talked  about  the  primate  animals,  and 
this  says  a  syndrome  resembling  AIDS  in  humans  has  been  ob- 
served in  groups  of  rhesus  monkeys  at  two  of  the  seven  NIH  divi- 
sions of  research-resources-funded  regional  primate  research  cen- 
ters. One  of  these  is  located  in  Massachusetts,  and  the  other  is  in 
California.  You  go  on  to  talk  about  the  comparison  of  the  symp- 
toms, and  indicate  that  it  occurs  in  some  cages,  but  not  in  others.  It 
would  appear  to  me  that  this  would  be  the  animal  or  subject  you 
are  looking  for  if  they  come  up  with  the  same  conclusion  or  possi- 
ble disease  without  us  even  getting  involved  with  it. 

Dr.  VoELLER.  So  far  as  simian  AIDS  is  concerned,  there  is  no 
reason  to  believe  it  is  the  same  or  identical  to  that  found  in  human 
beings.  There  are  experiments  being  conducted  by  the  NIH  in  col- 
laboration with  people  in  Massachusetts  and  the  University  of  Cali- 
fornia at  Davis  on  that.  There  is  I  repeat,  no,  foundation  for  believ- 
ing that  it  is  the  same  disease.  It  is,  however,  a  very  important  and 
striking  parallel  model  which  may  serve  to  edify  in  what  we  do 
with  human  beings. 


26-097    0—83 12 


174 

Dr.  SiEGAL.  I  would  like  to  comment  on  what  I  believe  to  be  in 
terms  of  the  Federal  response.  There,  in  fact,  have  been  several 
meetings  held;  held  at  NIH  in  September  of  1981.  We  had  a  meet- 
ing at  Mount  Sinai  in  July  of  1982  that  attracted  600  people,  and  it 
was  funded  by  NIH. 

The  people  who  have  been  funded  already  under  the  first  RFA 
met  already  in  May,  and  plan  to  meet  roughly  quarterly,  to  coordi- 
nate our  own  efforts;  and  within  the  city  of  New  York,  David 
Sencer  has  been  holding  meetings  monthly  at  which  all  the  investi- 
gators who  were  working  on  AIDS  were  initially  a  bit  standoffish. 
There  has  now  been  a  lot  of  coordination  between  various  groups 
willing  to  provide  information  to  other  people  on  an  ongoing  basis, 
and  we  are  seeing  a  good  deal  of  cooperation  and  interaction  be- 
tween people  at  the  level  of  grass-roots  investigators. 

Dr.  VoELLER.  We  do  note  that  out  of  all  of  that  discussion,  there 
is  no  master  plan  circulating  for  comment,  review,  or  collaboration. 
Mr.  Weiss.  Thank  you  very  much,  Mr.  McCandless.  I  have  one  or 
two  questions  as  a  followup. 

The  testimony  we  have  just  heard  from  this  panel  as  well  as 
from  Ms.  Apuzzo  was  outstanding  in  delineating  the  areas  of 
unmet  needs  that  we  ought  to  be  focusing  on  in  order  to  have  a 
comprehensive  way  of  dealing  with  this  situation. 

Dr.  Conant,  your  statistics,  your  projections  are  really  awe- 
some—I guess  is  the  word  that  comes  out  of  my  mind.  Again,  you 
said,  I  think,  that  by  the  end  of  next  year,  there  would  be  12,000 
cases,  if  nothing  intervenes,  and  you  said  there  would  be  over  three 
million  by  when? 

Dr.  Conant.  By  the  time  the  next  President  goes  out  of  office,  5 
years  from  now,  and  that  is  assuming  that  we  continue  to  double 
every  6  months. 

Now,  there  is  a  worst-case  scenario,  of  course.  The  best-case  sce- 
nario is  we  come  up  with  a  vaccine  and  stop  this  horror. 

There  are  cities:  if  you  plot  the  incidents  in  New  York  and  then 
the  incidents  in  San  Francisco,  two  curves  are  identical  except  they 
are  about  a  year  apart.  Looking  at  the  appearance  of  the  disease  in 
New  Orleans,  Washington,  and  Denver,  they  all  have  the  same  par- 
allel curves  a  year  or  so  down  the  line,  because  the  incubation 
period  is  about  18  months,  so  we  expect  not  only  to  continue  to  see 
the  disease  rise  in  high  incidence  areas,  but  we  expect  to  see  the 
base  widen  across  the  country. 

The  numbers  I  gave  are  based  on  the  figures,  doubling  it  every  5 
or  6  months  for  the  next  year. 

As  the  base  enlarges,  then  the  rate  of  doubling  will  increase,  and 
one  could  come  up  with  a  figure  that  it  soon  will  not  be  doubling 
every  6  months,  but  every  5  months,  and  then  every  4  months,  and 
then  every  3  months,  and  the  figure  might  reach  as  high  as  20  mil- 
lion cases  5  or  6  years  from  now. 

Mr.  Weiss.  Do  the  rest  of  you  generally  agree  with  those  projec- 
tions? Any  of  you  disagree  with  the  projection? 
Dr.  Siegal? 

Dr.  Siegal.  I  think  that  is  clearly  the  worst-case  scenario,  and  it 
is  also  perhaps  fair  to  argue  that  infectious  diseases  tend  to  use  up 
a  substratum  and  eventually  saturate  a  population. 


175 

I  don't  know  whether  we  can  really  expect  that  kind  of  geomet- 
ric progression  going  on.  People  are  changing  to  a  certain  degree 
the  way  they  behave,  and  those  ways  favor  the  spread  of  an  agent, 
and  I  think  we  might  expect  the  changes  in  behavior  will  continue 
to  increase  as  this  disease  increases,  but  it  is  quite  clear  that  it  has 
to  increase  to  a  certain  extent  because  there  are  a  lot  of  cases  in 
the  pipeline  already  about  which  we  can  clearly  do  nothing. 

Mr.  Weiss.  Right,  and,  finally,  Dr.  Voeller,  and  I  think  certainly 
others  of  you,  talked  about  numbers  of  dollars  that  would  be  in- 
volved to  stop  the  epidemic. 

Dr.  Krim  did  not  mention  a  specific  dollar,  but  brought  out  the 
alternative  to  not  spending  dollars. 

Are  you  all  in  general  agreement  that,  for  example,  the  figures 
that  Dr.  Voeller  used  of  $197  million,  roughly,  to  find  the  appropri- 
ate animal  on  which  to  do  the  research  is  an  accurate  projection 
and  beyond  that,  I  think  somebody  else  had  said  that  we  are  really 
talking  about  a  total  package  somewhere  in  the  vicinity  of  half  a 
billion  dollars,  $500  million. 

Do  those  numbers  seem  to  be  realistic  numbers  to  you  as  to  what 
the  unmet  needs  are  at  this  moment? 

Dr.  Krim? 

Dr.  Krim.  I  mentioned  in  my  statement  that  we  should  certainly 
think  for  something  in  the  order  of  $100  million,  and  in  addition  to 
the  $100  million  we  spend  already  for  these  patients  who  are  now 
in  experimental  treatment.  That  was  mj'  estimate  of  a  reasonable 
amount;  that  would  make  a  difference. 

Mr.  Weiss.  I  want  to  place  this  difficult  matter  in  context.  We 
are  going  to  have  the  CDC  and  other  HHS  officials  here  tomorrow. 

The  subcommittee  has  found  it  almost  impossible  to  get  past 
budget  numbers  until  very  recently.  We  still  have  not  been  able  to 
get  future  budget  projections,  because  the  administration  takes  the 
position  that  they  are  prohibited  or  forbidden  by  an  Executive 
order  from  sharing  them  with  us,  a  total  misreading,  as  far  as  I  am 
concerned,  of  their  obligations  and  our  responsibilities. 

In  any  event,  suffice  it  to  say  that  for  this  year,  the  outside 
number  is  about  $25  million,  including  $12  million  that  we  more  or 
less  thrust  upon  CDC,  NIH,  HHS.  We  are  a  long,  long  way  from 
the  kind  of  dollars  that  you  are  talking  about. 

You  want  to  make  a  comment.  Dr.  Krim? 

Dr.  Krim.  Yes,  Mr.  Chairman.  These  figures  of  $25  million  spent  in 
1983  puzzle  me.  I  don't  see  any  evidence  for  them  among  my 
colleagues. 

I  know  of  a  few  hundred  thousand  dollars  that  have  been  spent, 
actually  given  to  three  major  institutions  that  I  know.  But  even  if 
this  was  done  nationwide,  it  would  amount  to  $25  million,  or  $30 
million,  or  $40  million. 

Mr.  Weiss.  We  will  try  to  tie  that  down  tomorrow,  when  we  have 
Department  officials  before  us. 

Dr.  Krim.  You  should  really  ask  how  they  arrived  at  these  figures, 
because  the  NIH  has  a  way  of  calculating  amounts  spent  on  one 
health  problem  that  is  often  very  puzzling. 

For  example,  AIDS  involves  immunology.  The  NIH  could  say 
that  all  immunology  research  is  AIDS  research. 

Mr.  Weiss.  Dr.  Conant? 


176 

Dr.  CoNANT.  I  wanted  to  second  that.  In  my  testimony  I  referred 
to  double  bookkeeping,  where  any  type  of  cancer  which  may  vague- 
ly be  associated  with  Kaposi's  sarcoma  appears  to  be  figured  into 
the  NIH  budget,  and  it  would  be  very  good  for  you  to  question: 
what  are  these  moneys  being  used  for?  Was  this  research  that  was 
already  underway  before  the  AIDS  epidemic  even  began? 

Mr.  Weiss.  Thank  you. 

Mr.  Levin? 

Mr.  Levin.  Mr.  Chairman,  just  let  me  say— and  I  am  sorry  I 
missed  the  question-and-answer  session— but,  as  I  understand  it, 
you  have  been  covering  the  points  that  I  wanted  to  raise,  or  I 
hoped  would  be  raised,  trying  to  project  or  discuss  projections  into 
the  future,  and  how  conjectural  they  were,  and  the  potential  costs 
to  try  to  combat  the  problem. 

I  will,  with  interest,  try  to  obtain  from  your  staff,  Mr.  Chairman, 
as  well  as  the  people  who  are  working  more  directly  with  me,  the 
responses,  because,  as  I  sat  through  this  morning's  testimony,  it 
struck  me  how  important  is  our  oversight  responsibility. 

We  are  not  here  as  advocates,  and  we  are  not  here  to  try  to  ap- 
prove a  preordained  position.  We  are  here  to  determine  the  scope 
of  the  problem  and  the  adequacy  of  the  response  to  the  problem  by 
various  institutions,  including,  and  because  of  our  oversight  respon- 
sibilities, especially  governmental  institutions,  and  I  hope  very 
much  that  we  can  proceed  in  that  spirit,  and  not  to  do  something 
otherwise,  and  I  think  that  the  testimony  that  I  missed,  from  what 
I  can  determine,  was  especially  important  in  trying  to  help  de- 
scribe the  potential  dimensions  and  the  varying  points  of  view 
about  this,  and  it  should  be  helpful  as  we  proceed  with  the  rest  of 
this  hearing  and  then  as  we  proceed  to  take  testimony  from  CDC 
and  NIH. 

Mr.  Weiss.  All  right.  Thank  you  very  much. 

I  assume  that  this  panel,  too,  would  find  it  amenable  to  respond 
to  questions  which  may  be  submitted  later. 

Thank  you  all  very,  very  much.  We  appreciate  your  contribution 
and  your  patience. 

The  last  panel  consists  of  representatives  from  volunteer  service 
organizations:  Mel  Rosen,  Harold  Daire,  and  Christopher  Collins. 

Let  me  mention  a  few  things  about  the  organizations  that  are 
represented.  The  Gay  Men's  Health  Crisis  represented  by  Mr. 
Rosen  and  the  Dallas  AIDS  Project  represented  by  Mr.  Daire  were 
established  specifically  to  provide  support  for  communities  victim- 
ized by  the  epidemic. 

These  organizations  and  others  like  them  across  the  country 
have  mobilized  an  exemplary  effort  to  battle  not  only  the  medical 
problem,  but  also  to  cope  with  the  social,  psychological  and  eco- 
nomic problems  associated  with  AIDS. 

Also  with  us  today  are  representatives  from  the  Lambda  Legal 
Defense  and  Education  Fund,  which  dedicates  itself  to  protecting 
civil  rights  of  gay  men  and  lesbians,  including  the  issues  of  confi- 
dentiality. We  welcome  all  of  you. 

Mr.  Mel  Rosen,  member  of  the  board  of  directors,  and  former  ex- 
ecutive director.  Gay  Men's  Health  Crisis,  Mr.  Harold  Daire, 
founder  and  director,  Oaklawn  Counseling  Center,  Dallas  AIDS 


177 

Project,  and  Mr.  Christopher  ColHns,  cooperating  attorney,  Lambda 
Legal  Defense  and  Education  Fund. 

If  you  will  stand,  I  will  administer  the  affirmation. 

Do  you  affirm  to  tell  the  truth,  the  whole  truth  and  nothing  but 
the  truth? 

Mr.  Rosen.  I  do. 

Mr.  Daire.  I  do. 

Mr.  Collins.  I  do. 

Mr.  Weiss.  Let  the  record  indicate  that  each  of  the  witnesses 
have  indicated  affirmatively. 

I  appreciate  the  fact  that  you  have  been  here  for  the  bulk  of  the 
day,  but  because  the  House  is  in  session,  we  may  be  called  away  for 
a  vote  at  any  time. 

We  have  your  prepared  statements,  and  they  will  be  entered, 
without  objection,  into  the  record  in  their  entirety. 

If  you  summarize  your  prepared  statement  and  respond  to  ques- 
tions, as  time  allows,  it  may  be  the  most  effective  way  of  proceed- 
ing. I  think  we  will  start  with  you,  Mr.  Rosen,  and  then  proceed  to 
Mr.  Daire  and  Mr.  Collins. 

STATEMENT  OF  MEL  ROSEN,  GAY  MEN'S  HEALTH  CRISIS,  NEW 

YORK  CITY 

Mr.  Rosen.  Thank  you,  Mr.  Chairman. 

I  will  actually  skip  through  my  prepared  statement  and  go  down 
to  the  second  page  and  talk  to  you  about  the  specific  services  we 
have  had  to  create  within  our  organization  because  the  community 
and  basically  the  existing  social  service  agencies  do  not  meet  the 
emergent  needs  of  people  with  AIDS. 

When  a  person  is  told  he  or  she  has  AIDS  it  is  not  like  hearing 
that  they  have  cancer,  for  example.  When  you  have  cancer  you  are 
told  what  the  diagnosis,  prognosis  and  treatments  are.  When  you 
are  told  that  you  have  AIDS  you  are  hearing  that  you  have  a  time 
bomb  inside  of  you,  that  any  day  you  will  get  an  opportunistic  in- 
fection and  one  of  these  infections  would  kill  you,  usually  within  3 
years. 

The  person  goes  into  a  crisis.  In  many  cases  the  person  with 
AIDS  does  not  have  a  nuclear  family  for  support.  We  therefore  cre- 
ated a  crisis  intervention  unit  of  trained  lay  counselors  who  get  to 
the  person  with  AIDS  within  12  hours  of  their  initial  phone  call  to 
us.  This  counselor  actively  works  with  the  person  with  AIDS  and 
helps  them  cope  during  this  initial  period.  We  started  with  15 
counselors  last  October;  today  we  have  175. 

Hopefully  the  person  realizes  after  a  while  that  they  may  not  die 
tomorrow,  next  month  or  next  year.  At  this  point  we  introduce 
them  to  one  of  our  support  groups.  People  learned  to  cope  from 
each  other's  experiences.  In  October  we  started  one  group.  Today 
we  have  12  groups  not  only  for  people  with  AIDS  but  groups  for 
husbands,  wives,  lovers,  friends,  mothers,  fathers,  and  significant 
others.  Although  our  name  starts  with  the  word  "gay,"  our  services 
are  offered  to  and  used  by  all  affected  people  and  those  around 
them. 

We  found  that  there  were  many  people  sent  home  from  hospitals 
who  were  too  sick  to  take  care  of  themselves.  We  therefore  created 


178 

a  buddy  system  or  home  attendant  service  made  up  of  people  who 
cook,  clean,  and  generally  care  for  the  person  at  home  with  AIDS 
who  is  too  sick  to  take  care  of  themselves.  In  one  case  a  person 
with  AIDS  was  being  thrown  out  of  their  house  so  the  buddies 
found  him  a  new  apartment  and  moved  him  in  one  weekend.  We 
started  with  7  buddies;  we  now  have  75. 

The  disease  does  not  discriminate  for  or  against  people  who  are 
rich  or  poor.  We  found  that  people  making  $40,000  a  year  like  my 
client  were  losing  everything  they  had.  Even  people  who  were  well- 
insured  were  wiped  out  after  numerous  stays  in  the  hospitals.  Each 
opportunistic  infection  could  mean  a  month  or  more  in  the  hospi- 
tals. 

We  set  up  a  financial  aid  committee  that  assisted  people  with 
AIDS  to  apply  for  public  assistance  benefits  they  were  entitled  to. 
We  also  assisted  numerous  legislators  to  put  pressure  on  the  Social 
Security  Administration  to  create  a  definition  for  AIDS  so  people 
could  get  disability  insurance.  Even  when  the  definition  was  added, 
it  was  inadequate.  Only  people  with  the  CDC  definition  of  AIDS 
are  eligible  today;  for  example,  herpes  osters  is  not  included. 

This  forces  people  with  prodromal  symptoms  to  continue  to  work 
when  it  is  possible  that  working  could  hasten  a  case  of  full-blown 
AIDS.  Our  financial  aid  committee  is  stretched  to  its  limits  at  this 
point. 

Dr.  Irving  Selikoff  at  Beth  Israel  Hospital  asked  me  to  read  into 
the  record  the  case  of  one  person  who  is  not  considered  to  be  a 
CDC-defined  person  with  AIDS.  I  won't  do  that  now  because  of 
time,  but  I  will  give  this  to  you  to  add  into  the  record. 

Mr.  Weiss.  Without  objection. 

[The  information  follows:] 


a^/^ 


179 


Irving  J.  Selikoff,  M.D. 

.1       \I^U  ) 

4.  Results.  ''  G':,.^'^ 

a.  Initial  medical  findings. 

Immunological  status  of  the  study  group  exhibited  far  greater  com- 
plexity than  had  been  anticipated  on  the  basis  of  previous  reports. 

Many  of  the  100  men  had  general  symptoms  that  have  been  reported  as 
associated  with  AIDS  manifestation.  Fever  lasting  more  than  one  week 
was  acknowledged  by  17%,  night  sweats  by  1A%,  unexplained  weight  loss 
greater  than  ten  pounds  by  11%  and  unusual  headaches  by  17%.  On 
physical  examination  48%  had  palpable  lymph  nodes  felt  by  the  exa- 
mining physician  to  be  clinically  abnormal.  Inguinal  nodes  were 
palpable  in  47%  and  34%  had  palpable  nodes  at  two  or  more  noninguinal 
sites.   Anogenital  lesions  were  noted  in  37%  by  the  dermatologist. 

Infections  were  frequent  with  venereal  infections  being  most  common. 
Gastrointestinal  symptoms  were  common,  with  31%  having  diarrhea  last- 
ing more  than  one  week,  and  respiratory  symptoms  were  also  prominent, 
with  episodes  of  dyspnea  in  27%. 

Each  examinee  was  sent  a  summary  report  of  findings  (Appendix  2);  at 
his  request,  details  of  findings  were  also  sent  to  his  physician. 

_ —   jCase  1  demonstrates  the  range  of  symptoms  which  may  be  present  with- 
^^-    out  CDC  criteria  for  AIDS  being  satisfied. 

Case  1 

The  patient  reported  having  had  many  sexually  transmit- 
ted diseases.  Hepatitis  B  occurred  in  1979  with  relap- 
ses in  1979,  1981  and  1982.  His  health  in  general  had 
been  poor  with  a  20  pound  weight  loss,  night  sweats, 
chills,  lymphadenopathy ,  malaise,  fatigue,  increased 
nasal  stuffiness,  moderately  severe  episodes  of  short- 
ness of  breath,  arthralgias,  absence  of  semen  on  ejacu- 
lation, progressive  muscular  weakness  and  loss  of 
memory.  On  physical  examination,  he  had  generalized 
palpable  nodes,  abdominal  tenderness,  hyperactive 
tendon  reflexes,  muscular  weakness,  and  molluscum 
contagiosum  on  his  neck.  All  routine  laboratory  tests 
were  normal.  His  H/S  ratio  was  0.8.  Other  immunolo- 
gical tests  were  normal  except  that  B-cell  function  was 
decreased  (48:  normal '^^65) .  The  IgG  level  was  1,777 
mg/dl  (normal^^  1,500).  His  C-reactive  protein  level 
was  0.1  (normar*^'' 0.9) .  He  had  no  response  to  recall 
antigens  for  PPD,  mumps,  dermatophytin.  There  was  a  19 
mm  response  to  Candida.  Subsequent  to  our  examination, 
he  developed  hepatosplenomegaly  and  received  treatment 
for  arthralgias  with  plasmapheresis  to  remove  circulat- 
ing immune  complexes.  He  remains  under  the  care  of  has 
physician  (July  6,  1983). 


180 

Mr.  Rosen.  Our  hotline  which  I  mentioned  earlier  started  receiv- 
ing about  20  calls  a  week  last  summer.  It  now  handles  over  1,000 
calls  a  week.  Callers  range  from  those  in  search  of  a  medical  doctor 
familiar  with  AIDS  to  people  calling  in  a  complete  panic  over  what 
they  perceive  as  a  symptom.  Thirty  volunteers  and  one  full-time 
staff  member  operate  this  line. 

While  misinformation  or  sensationalistic  reporting  has  created 
the  perception  that  the  general  public  can  contract  AIDS  through 
casual  contact,  the  reality  is  that  people  with  AIDS  can  contract 
opportunistic  infections  through  casual  contact  with  the  general 
population.  People  with  AIDS  sometimes  become  shut-ins.  We  have 
tried  to  combat  this  by  creating  recreational  groups  that  get  people 
out  of  their  homes  and  into  social  and  recreational  situations. 

People  with  AIDS  have  an  average  age  of  35.  In  addition  they 
often  are  in  nontraditional  conjugal  relationship.  These  two  factors 
create  a  multitude  of  legal  problems  in  terms  of  wills  and  power  of 
attorney.  Hospitals  in  many  cases  do  not  recognize  what  should  be 
considered  a  common  law  relationship  between  two  people.  We 
have  attempted  to  deal  with  these  legal  problems  by  coordinating  a 
network  of  legal  services  which  advise  the  person  with  AIDS  of 
their  legal  rights  and  responsibilities. 

We  have  networked  with  the  American  Red  Cross  to  establish  a 
transportation  service  providing  the  means  for  people  with  AIDS  to 
get  back  and  forth  from  hospital  treatments.  In  addition,  the  Red 
Cross  trains  our  buddies  in  modern  home  attendant  care  practice. 

The  nonresponse  by  the  public  health  agencies  at  all  levels  of 
Government  forced  us  to  create  and  furnish  educational  and  infor- 
mational services.  Two  newsletters  which  were  really  booklets  con- 
taining everything  we  know  to  date  have  been  distributed  across 
the  country  to  anyone  wo  asks  for  them  at  no  charge.  This  includes 
not  only  people  who  request  them  but  hospitals,  clinics,  mental 
health  facilities,  and  public  health  facilities. 

In  addition,  we  created  a  health  recommendation  brochure  which 
has  been  distributed  to  half  a  million  people.  This  brochure  con- 
tains information  ranging  from  the  symptoms  of  this  new  disease 
to  a  recommendation  by  a  number  of  physicians  for  people  to  limit 
their  number  of  multiple  sexual  contacts. 

We  have  an  AIDS  information  van  which  travels  to  different 
neighborhoods  and  distributes  educational  materials.  Trained  coun- 
selors are  available  to  speak  with  people  who  feel  the  need  to  talk 
with  someone. 

We  have  traveled  across  the  United  States  to  give  technical  as- 
sistance to  any  group  who  wish  to  start  an  AIDS  self-help  organiza- 
tion. 

We  have  rented  auditoriums  and  presented  seminars  to  the  com- 
munity presenting  doctors,  social  workers,  psychologists,  psychia- 
trists, legal  experts,  and  insurance  experts.  At  our  last  open  forum 
seminar  2,500  people  showed  up.  No  one  can  understand  what 
problems  develop  when  young  people  in  the  community  are  thrust 
into  the  mind  set  of  elderly  people  who  are  adjusted  to  death  as  a 
fact  of  life. 

We  present  seminars  in  hospitals  to  doctors,  nurses,  and  social 
workers.  These  seminars  focus  in  on  the  psychosocial  effects  of 
AIDS.  The  Health  and  Hospital  Corp.  has  contracted  with  us  to 


181 

present  these  seminars  to  every  one  of  the  hospitals  within  their 
system.  We  are  currently  providing  seminars  to  at  least  one  volun- 
tary hospital  each  week.  So  many  health  groups  have  asked  for 
seminars  that  we  had  to  procure  an  auditorium  and  present  a 
seminar  to  all  of  them  at  once. 

In  the  area  of  research,  we  have  granted  $60,000  to  research  proj- 
ects which  would  have  had  to  stop  for  lack  of  funding,  or  which 
could  not  have  gotten  started  because  funding  is  so  slow. 

In  the  past  3  months  a  new  problem  has  developed:  Housing. 
People  with  AIDS  are  being  discharged  from  hospitals  penniless 
and  homeless.  The  most  that  can  be  done  through  the  city  at  this 
time  is  placement  in  an  SRO  building.  These  buildings  are  dirty, 
dangerous,  and  certainly  not  a  place  where  a  very  sick  person 
should  live.  The  distorted  image  that  the  press  has  given  this  dis- 
ease has  caused  many  people  with  AIDS  to  be  thrown  out  of  their 
homes.  Although  we  would  rather  not  get  into  the  housing  busi- 
ness, we  are  being  pushed  to  buy  a  house  in  order  to  shelter  these 
sick  people.  I  don't  think  this  is  our  job. 

Over  the  past  year  we  have  gone  from  an  organization  of  40  vol- 
unteers to  1,000  volunteers.  We  now  have  a  full-time  core  staff  of  7, 
everyone  else  volunteering  their  time.  As  a  not-for-profit  agency, 
we,  of  course,  want  to  provide  medical  insurance  to  our  staff.  How- 
ever, every  major  carrier  we  have  contacted  has  turned  us  down.  If 
this  is  a  sign  of  the  future,  then  we  must  act  swiftly  so  that  people 
in  high-risk  groups  are  not  discriminated  against  when  applying 
for  insurance. 

The  Federal  Government  has  not  done  its  share.  You  must  ap- 
propriate massive  sums  of  money  for  research  into  this  disease. 
You  must  appropriate  money  to  the  States  so  they  can  distribute 
moneys  to  local  self-help  organizations  or  set  up  their  own  pro- 
grams. If  you  are  not  motivated  to  help  disenfranchised  groups,  let 
me  tell  you  something  as  a  professional  social  worker. 

Although  it  is  not  much  talked  about,  sexuality  is  not  static. 
People  have  different  sexual  preferences  throughout  their  lives. 
This  is  part  of  the  human  condition.  Talk  by  people  who  would 
turn  a  medical  problem  into  a  political  one  is  disgraceful  and  be- 
longs in  the  dark  ages.  For  those  who  would  consider  legislating 
morality,  this  has  been  tried  before  without  success.  The  human 
condition  is  continuously  in  flux. 

Since  most  researchers  and  health  officials  have  determined  that 
this  disease  is  sexually  transmitted,  it  is  probably  the  long  incuba- 
tion period  that  has  kept  the  disease  for  the  most  part  confined  to 
certain  groups.  This  will  change  shortly.  There  is  a  steaming  loco- 
motive roaring  down  the  tracks  at  the  general  population.  The 
people  of  this  country  depends  on  your  God-given  wisdom  to  ascer- 
tain the  eventuality  of  certain  events  and  to  protect  them. 

I  call  upon  you  to  not  only  appropriate  the  necessary  funds  but 
to  create  an  office  inside  the  Department  of  Health  and  Human 
Services  that  does  two  things:  one,  to  establish  a  national  effort 
that  coordinates  services  to  affected  individuals  and  a  national  edu- 
cational effort  to  the  public  at  large  and,  two,  gives  resources  and 
technical  assistance  to  States  and  self-help  organizations  in  loca- 
tions where  the  disease  is  spreading  or  likely  to  spread. 

[The  prepared  statement  of  Mr.  Rosen  follows:] 


182 

Prepared  Statement  of  Mel  Rosen,  Gay  Men's  Health  Crisis,  New  York  City 

In  January  1982  about  80  people  who  had  lost  friends  and 
loved  ones  to  a  new  and  mysterious  disease  gathered  at  author 
Larry  Kramer's  apartment  in  New  York  City.   There  they  learned 
from  Dr.  Alvin  Friedman-Kien  of  New  York  University  Medical 
Center  that  what  appeared  to  be  a  new  disease  was  spreading 
among  a  number  of  divergent  populations.   Dr.  Friedman-Kien 
warned  that  if  the  numbers  continued  to  rise  in  the  following 
months  as  they  had  in  the  previous  months  we  would  shortly  be 
in  the  middle  of  a  new  epidemic.   One  member  of  the  group  which 
was  predominantly  gay  commented  that  this  could  turn  out  to  be 
a  terrible  health  crisis  for  gay  men,  hence  the  name  Gay  Men's 
Health  Crisis.   The  group  decided  that  they  would  raise  funds 
for  research  into  this  new  disease  and  organized  a  fundraiser 
that  April  which  netted  $50,000.   At  this  point  they  applied 
for  tax  exempt  not-for-profit  status.   The  money  raised  went  to 
research  and  the  establishment  of  an  AIDS  hotline. 

Two  months  later  I  read  about  this  new  organization  giving 
away  its  money  to  research  and  was  so  impressed  that  I  sent  them 
a  letter  offering  help,  explaining  that  I  was  Vice  President  of  a 
large  social  service  agency.   Within  2A  hours,  (the  mail  service 
worked  that  day)  I  was  having  lunch  with  the  President  of  the 
Board  who  asked  me  to  put  an  organization  together.   While  I  did 
not  say  I  would  do  so,  I  promised  to  look  into  the  matter.   Over 
the  next  two  weeks  I  spoke  with  doctors,  researchers  and  patients. 
I  did  an  unscientific  needs  assessment  survey  which  made  me  come 


183 


to  the  shocking  conclusion  that  the  automatic  safeguards  that 
I  thought  the  government  had  in  place  to  warn  and  protect  people 
from  epidemics  did  not  exist  in  this  case.   In  a  conversation 
with  the  CDC  at  that  time  I  remember  asking  for    month-by-month 
statistics  on  cases  and  mortality.    I  remember  telling  the  CDC 
that  either  they  were  crazy  or  I  was  crazy  but  their  numbers 
reflected  an  epidemic.   I  remember  visiting  Dr.  Roger  Enlow  at 
Beth  Israel  Hospital  who  introduced  me  to  a  dying  patient. 
Imagine  my  horror  when  that  patient  turned  out  to  be  an  acquaint- 
ance of  mine.   The  patient  did  not  die  during  that  bout  with 
that  opportunistic  infection  but  became  my  client  (I  am  a  social 
worker)  whom  I  followed  through  a  progression  of  terrible  and 
painful  infections  until  his  death  three  weeks  ago.   This  was  a 
man  who  made  $40,000  per  year  but  died  destitute.   By  carrying 
him  as  a  client  I  was  able  to  help  build  an  agency  which  would 
respond  to  the  special  needs  of  people  with  AIDS.   Most  of  these 
services  would  have  been  automatic  for  any  terminally  ill  patient. 
In  the  cases  of  the  AIDS  patients  those  services  were  not  forth- 
coming.  Fear  of  the  diseases,  fear  of  death,  fear  of  disenfran- 
chised minorities  all  added  to  the  lack  of  services  by  private 
and  government  agencies.   What  we  did  to  compensate  is  the 
following . 


c 


When  a  person  is  told  he  or  she  has  AIDS  it  is  not  like  hear- 
ing that  they  have  cancer,  for  example.   When  you  have  cancer  you 
are  told  what  the  diagnosis,  prognosis  and  treatments  are.   When 


184 


you  are  told  that  you  have  AIDS  you  are  hearing  that  you  have  a  time 
bomb  inside  of  you.   That  any  day  you  will  get  an  opportunistic 
infection  and  one  of  these  infections  would  kill  you,  usually  within 
three  years.   The  person  goes  into  a  crisis.   In  many  cases  the 
person  with  AIDS  does  not  have  a  nuclear  family  for  support.   We 
therefore  created  a  Crisis  Intervention  Unit  of  trained  lay  coun- 
selors who  get  to  the  person  with  AIDS  within  12  hours  of  their 
initial  phone  call  to  us.   This  counselor  actively  works  with  the 
person  with  AIDS  and  helps  them  cope  during  this  initial  period. 
We  started  with  fifteen  counselors  last  October;  today  we  have  175. 

Hopefully  the  person  realizes  after  a  while  that  they  may  not 
die  tomorrow,  next  month  or  next  year.   At  this  point  we  introduce 
them  to  one  of  our  support  groups.   People  learned  to  cope  from 
each  other's  experiences.   In  October  we  started  one  group.   Today 
we  have  12  groups  not  only  for  people  with  AIDS  but  groups  for 
husbands,  wives,  lovers,  friends,  mothers,  fathers  and  significant 
others.   Although  our  name  starts  with  the  word  gay,  our  services 
are  offered  to  and  used  by  all  affected  people  and  those  around 
them. 


We  found  that  there  were  many  people  sent  home  from  hospitals  who 
were  too  sick  to  take  care  of  themselves.   We  therefore  created  a 
Buddy  System  or  Home  Attendant  Service  made  up  of  people  who  cook, 
clean  and  generally  care  for  the  person  at  home  with  AIDS  who  is 
too  sick  to  take  care  of  themselves.   In  one  case  a  person  with 


185 


AIDS  was  being  thrown  out  of  their  house  so  the  buddies  found  him 
a  new  apartment  and  moved  him  in  one  weekend.   We  started  with 
7  buddies;  we  now  have  75. 

The  disease  does  not  discriminate  for  or  against  people  who  are 
rich  or  poor.   We  found  that  people  making  forty  thousand  dollars 
a  year  like  my  client  were  losing  everything  they  had.   Even  people 
who  were  well-insured  were  wiped  out  after  numerous  stays  in  the 
hospitals.   Each  opportunistic  infection  could  mean  a  month  or  more 
in  the  hospitals.   We  set  up  a  financial  aid  committee  that  assisted 
people  with  AIDS  to  apply  for  public  assistance  benefits  they  were 
entitled  to  .   We  also  assisted  numerous  legislators  to  put  pressure 
on  the  Social  Security  Administration  to  create  a  definition  for 
AIDS  so  people  could  get  Disability  Insurance.   Even  when  the  defin- 
ition was  added  it  was  inadequate.   Only  people  with  the  CDC  defin- 
ition of  AIDS  are  eligible  today.   This  forces  people  with  prodromal 
symptoms  to  continue  to  work  when  it  is  possible  that  working  could 
hasten  a  case  of  full  blown  AIDS.   Our  Financial  Aid  Committee  is 
stretched  to  its  limits  at  this  point. 


Our  Hotline  which  I  mentioned  earlier  started  receiving  about 
20  calls  a  week  last  summer.   It  now  handles  over  1,000  calls  a 
week.   Callers  range  from  those  in  search  of  a  medical  doctor  fam- 
iliar with  AIDS  to  people  calling  in  a  complete  panic  over  what  they 
perceive  as  a  symptom.   Thirty  volunteers  and  one  full  time  staff 
member  operate  this  line. 


186 


While  misinformation  or  sensationalistic  reporting  has 
created  the  perception  that  the  general  puolic  can  contract  AIDS 
through  casual  contact,  the  reality  is  that  people  with  AIDS  can 
contract  opportunistic  infections  through  casual  contact  with  the 
general  population.   People  with  AIDS  sometimes  become  shut-ins. 
We  have  tried  to  combat  this  by  creating  recreational  groups  that 
get  people  out  of  their  homes  and  into  social  and  recreational 
situations. 

People  with  AIDS  have  an  average  age  of  35.   In  addition  they 
often  are  in  non-traditional  conjugal  relationship.   These  two 
factors  create  a  multitude  of  legal  problems  in  terms  of  will  and 
power  of  attorney.   Hospitals  in  many  cases  do  not  recognize  what 
should  be  considered  a  common-law  relationship  between  two  people. 
We  have  attempted  to  deal  with  these  legal  problems  by  coordinating 
a  network  of  legal  services  which  advise  the  person  with  AIDS  of 
their  legal  rights  and  responsiblities . 

We  have  networked  with  the  American  Red  Cross  to  establish  a 
transportation  service  providing  the  means  for  people  with  AIDS 
to  get  back  and  forth  from  hospital  treatments.   In  addition  the 
Red  Cross  trains  our  buddies  in  modern  home  attendant  care  practice. 

The  non-response  by  the  public  health  agencies  at  all  levels  of 
government  -»«ree9  us  to  create  and  furnish  educational  and  inform- 
ational services.   Two  newsletters  which  were  really  booklets 


187 


containing  everything  we  know  to  date  have  been  distributed 
across  the  country  to  anyone  who  asks  for  them  at  no  charge. 
This  includes  not  only  people  who  request  them  but  hospitals, 
clinics,  mental  health  facilities  and  public  health  facilities. 
In  addition,  we  created  a  health  recommendation  brochure  which  has 
been  distributed  to  half  a  million  people.   This  brochure  contains 
information   ranging  from  the  symptoms   of  this  new  disease  to  a 
recommendation  by  a  number  of  physicians  for  people  to  limit  their 
number  of  multiple  sexual  contacts. 

We  have  an  AIDS  information  y?an  which  travels  to  different  neigh- 
borhoods and  distributes  educational  materials.   Trained  counselors 
are  available  to  speak  with  people  who  feel  the  need  to  talk  with 
someone . 

We  have  traveled  across  the  United  States  to  give  technical 
assistance  to  any  group  who  wish  to  start  an  AIDS  self-help  organ- 
zation. 


We  have  rented  auditoriums  and  presented  seminars  to  the  comm- 
unity presenting  doctors,  social  workers,  psychologists,  psychi- 
atrists, legal  experts,  and  insurance  experts.   2,500  people 
showed  up  at  our  last  open  forum  seminar.   No  one  can  understand 
what  problems  develop  when  young  people  in  the  community  are 
thrust  into  the  mind  set  of  elderly  people  who  are  adjusted  to  death 
as  a  fact  of  life. 


188 


We  present  seminars  in  hospitals  to  doctors,  nurses  and 
social  workers.   These  seminars  focus  in  on  the  psychosocial 
affects  of  AIDS.   The  Health  and  Hospital  Corporation  has  contracted 
with  us  to  present  these  seminars  to  every  one  of  the  hospitals 
within  their  system.   We  are  currently  providing   seminars  to  at 
least  one  voluntary  hospital  each  week.   So  many  health  groups  have 
asked  for  seminars  that  we  had  to  procure  an  auditorium  and  present 
a  seminar  to  all  of  them  at  once. 

In  the  area  of  research  we  have  granted  $60,000  to  research 
projects  which  would  have  had  to  stop  for  lack  of  funding. 

In  the  past  three  months  a  new  problem  has  developed: 
housing.   People  with  AIDS  are  being  discharged  from  hospitals 
penniless  and  homeless.   The  most  that  can  be  done  through  the  city 
at  this  time  is  placement  in  a  SRO  building.   These  buildings  are 
dirty,  dangerous  and  certainly  not  a  place  where  a  very  sick  person 
should  live.   The  distorted  image  that  the  press  has  given  this 
disease  has  caused  many  people  with  AIDS  to  be  thrown  out  of  their 
homes.   Although  we  would  rather  not  get  into  the  housing  business 
we  are  being  pushed  to  buy  a  house  in  order  to  shelter  these  sick 
people.   I  don't  think  this  is  our  job. 

Over  the  past  year  we  have  gone  from  an  organization  of  40 
volunteers  to  1,000  volunteers.   We  now  have  a  full  time  core 
staff  of  7,  everyone  else  volunteering  their  time.   As  a  not-for- 
profit  agency  we  of  course  want  to  provide  medical  insurance  to  our 


189 


staff.   However,  every  major  carrier  we  have  contacted  has  turned 
us  down.   If  this  is  a  sign  of  the  future  then  we  must  act  swiftly 
so  that  people  in  high  risk  groups  are  not  discriminated  against 
when  applying  for  insurance. 

I  sit  before  you  a  very  changed  man  from  a  year  ago  when  I 
called  the  CDC.   I  have  discovered  that  medicine,  research  and  the 
so-called  safeguards  we  have  in  place  to  warn  us  about  pending  dis- 
asters are  political  and  do  not  work  when  disenfranchised  minorities 
are  involved.   When  toxic  shock  and  Legionaire's  disease  first 
came  on  the  scene  there  was  an  immediate  response  by  government 
and   press.   Why  did  hundreds  ofpeople  have  to  die  before  anyone 
moved  in  this  case?   Single  people  pay  a  very  high  percentage  of 
their  salaries  to  the  federal  tax  structure.   Since  most  of  the 
affected  individuals  affected  by  AIDS  are  single  they  expect  something 
back  from  the  government  they  trust.   It  is  the  American  way  for  us 
to  respect  and  care  for  the  individual  person  who  is  in  trouble  in 
our  country.  I  have  become  disillusioned  about  this  in  the  past  year 
in  relation  to  our  government.   However,  I  take  heart  in  the  response 
of  the  community  itself.   People  from  all  walks  of  life  have  come 
forward.   The  President  of  our  board  is  a  Fortune  500  corporate  exec- 
utive who  was  a  Green  Beret  in  Vietnam.   Our  Crisis  Intervention 
Coordinator  was  a  marine  in  Vietnam.   We  have  policemen,  firemen, 
doctors,  nurses,  social  workers,  priests,  rabbis;   people  from  all 
walks  of  life   volunteer  with  us. 

The  federal  government  has  not  done  its  share.   You  must  appro- 


26-097  0-83 13 


190 


priate  massive  sums  of  money  for  research  into  this  disease.   You 
must  appropriate  money  to  the  States  so  they  can  distribute  monies 
to  local  self-help  organizations  or  set  up  their  own  programs. 
If  you  are  not  motivated  to  help  disenfranchised  groups  let  me  tell 
you  something  as  a  professional  social  worker.    Although  it  is  not 
much  talked  about,  sexuality  is  not  static.   People  have  different 
sexual  preferences  throughout  their  lives.   This  is  part  of  the  human 
condition.   Talk  by  people  who  would  turn  a  medical  problem  into  a 
political  one  is  disgraceful  and  belongs  in  the  dark  ages.   For  those 
who  would  consider  legislating  morality,  this  has  been  tried  before 
without  success.   The  human  condition  is  continuously  in  flux.   Since 
most  researchers  and  health  officials  have  determined  that  this  dis- 
ease is  sexually  transmitted,  it  is  probably  the  long  incubation 
period  that  has  kept  the  disease  for  the  most  part  confined  to  certain 
groups.   This  will  change  shortly.   There  is  a  steaming  locomotive 
roaring  down  the  tracks  at  the  general  population.   The  people  of 
this  country  depends  on  your  God-given  wisdom  to  ascertain  the  event- 
uality of  certain  events  and  to  protect  them. 


I  call  upon  you  to  "ot  only  appropriate  the  necessary  funds 
but  to  create  an  office  inside  the  Department  of  Health  and  Human 
Services  that  does  two  things:  1)  to  establish  a  national  effort 
that  coordinates  services  to  affected  individuals  and  a  national 
educational  effort  to  the  public  at  large  and  2)  gives  resources 
and  technical  assistance  to  states  and  self-help  organizations  in 
locations  where  the  disease  is  spreading  or  likely  to  soread. 

Thank  you  for  the  opportunity  to  speak  with  you. 


191 


Mr.  Weiss.  Mr.  Daire. 


STATEMENT  OF  HAROLD  P.  DAIRE,  FOUNDER  AND  DIRECTOR, 
OAKLAWN  COUNSELING  CENTER,  DALLAS  AIDS  PROJECT, 
DALLAS,  TEX. 

Mr.  Daire.  I  am  deeply  honored  my  testimony  has  been  request- 
ed. 

The  following  presentation  represents  my  attempts  at  reporting 
conditions,  feelings,  needs  and  recommendations  of  Texans  as  ob- 
jectively as  I  am  able. 

We  have  been  forced  to  spread  educational,  clearing  house,  and 
patient  support  services  to  AIDS  patients  and  their  loved  ones 
throughout  the  State.  We  also  sponsor  a  24-hour  hotline.  However, 
the  medical  problems  of  AIDS  are  really  what  I  have  come  to 
speak  about. 

Solving  the  AIDS  problem  requires  response  and  coordination  of 
resources  at  all  levels  of  our  society.  We  are  dealing  with  a  medical 
unknown  which  has  vast  psychological  and  sociological  implica- 
tions. We  must  shut  the  moral  door  and  deal  with  a  medical  issue 
now,  nonjudgmentally. 

In  Texas  many  efforts  are  being  undertaken  in  attempts  to 
combat  the  AIDS  problem.  Attempts  at  defining  the  problem  are 
uncoordinated  and  by  no  means  systematic.  A  Federal  task  force  is 
necessary  to  help  local  health  officials  define  their  roles.  Local 
health  care  delivery  systems  are  straining  internal  resources  in 
dealing  with  the  AIDS  registry  in  Dallas.  There  is  no  registry  in 
Houston.  Attempts  at  estimating  cases  in  San  Antonio  were  futile 
with  numbers  ranging  from  10  to  34,  depending  upon  whom  I  con- 
tacted. 

The  time  to  contain  the  growth  of  this  epidemic  is  now,  not  2 
years  from  now.  It  is  imperative  that  communitywide  networks  be 
established  providing  surveillance,  health  care,  and  followup.  In 
dealing  with  AIDS,  a  format  by  which  existing  agencies  could  pro- 
vide some  form  of  health  services  is  in  place.  It  has  been  suggested 
that  we  apply  strategies  already  practiced  for  the  containment  of 
sexually-transmitted  disease.  This  format  must  address  need  with- 
out antagonizing  confidentiality  and  without  judging  lifestyle.  To 
effectively  implement  the  program,  the  resources  of  existing  struc- 
tures such  as  the  Counseling  Center  must  be  increased. 

The  definition  of  AIDS  must  be  reexamined.  The  current  Centers 
for  Disease  Control  definition  addresses  only  those  people  with 
AIDS  who  have  developed  malignancies  or  opportunistic  infections. 

Physicians  at  M.D.  Anderson  Hospital  in  Houston,  Tex.,  have  ex- 
panded the  CDC  definition  to  include  the  term  "AIDS-related  com- 
plex." This  has  enabled  the  physicians  to  intervene  as  early  as  pos- 
sible in  order  to  affect  cure  or  remission.  It  enables  health  officials 
to  conduct  follow-up  on  exposed  individuals  early,  allowing  staff  to 
contact  those  individuals  who  are  at  risk,  providing  them  with  in- 
formation necessary  to  contain  the  spread  of  AIDS.  AIDS-related 
complex  does  not  necessarily  develop  into  AIDS.  Some  recover  from 
the  symptoms  spontaneously. 

To  support  a  statement  made  by  Dr.  Hirsh  recently,  in  combat- 
ing AIDS,   research  is  of  primary  importance.   However,   reason 


192 

must  be  used  in  assigning  projects  which  may  be  harmful.  A  case 
in  point:  According  to  Dr.  Peter  Mansell  of  M.  D.  Anderson,  Hous- 
ton, chemotherapy  is  not  the  first  treatment  of  choice  for  Kaposi's 
sarcoma  in  most  patients.  Dr.  Evan  Hirsh  of  M.  D.  Anderson,  Hous- 
ton, stated,  "Chemotherapy  is  often  lethal  to  KS/AIDS  patients 
*  *  *."  Both  recommended  the  use  of  interferon  drugs. 

It  has  been  described  as  a  critical  issue  of  major  importance  that 
the  FDA  approve  the  use  of  interferon  without  randomized  clinical 
trials.  Patients  will  be  killed  using  the  trials.  Based  on  studies  in 
San  Francisco,  New  York,  Los  Angeles,  and  Houston,  interferon 
studies  are  the  same.  Interferon  is  relatively  nontoxic.  It  is  impor- 
tant to  advocate  the  patient's  right  to  select  among  treatment  mo- 
dalities and  to  know  what  is  being  dripped  into  their  veins. 

Along  the  lines  of  patient  support,  the  overriding  issue  in  Texas 
stems  from  the  destructive  effect  of  AIDS  on  a  person's  entire 
social  network.  People  with  AIDS  often  lose  jobs,  residence,  money, 
friends,  and  family. 

In  Texas,  as  in  other  major  areas  of  the  United  States,  communi- 
ties have  organized  groups  to  meet  patient's  psychosocial  needs  and 
provide  education.  Unlike  New  York  City,  San  Francisco,  and  Los 
Angeles,  organizations  in  Dallas  and  Houston  are  entirely  depend- 
ent upon  private  contributions  to  fund  support  services.  The  KS 
AIDS  Foundation  and  Committee  for  Public  Health  Awareness  of 
Houston,  the  Oak  Lawn  Counseling  Center  AIDS  Project,  the 
Dallas  Gay  Alliance  and  the  Dallas  AIDS  Action  Project  have  been 
hampered  in  their  efforts  to  petition  for  State  and  municipal  funds 
because  time  and  energy  must  be  devoted  to  combat  groups  such  as 
Dallas  Doctors  Against  AIDS  and  Alert  Citizens  of  Texas.  Any  ef- 
forts to  express  needs  for  State  AIDS  funding  have  been  neutral- 
ized by  the  negativism  of  these  groups. 

On  the  municipal  level,  community  organizations  have  petitioned 
their  cities  for  support.  How  the  cities  have  responded  so  far 
amounts  to  little  more  than  lip  service.  The  city  of  Dallas  passed  a 
resolution  supporting  the  need  for  the  release  of  Federal  funds. 
The  city  of  Houston  appropriated  $78,000  to  fund  a  State-mandated 
AIDS  registry.  In  Houston,  the  funds  have  not  become  available 
nor  the  registry  established. 

On  a  national  level,  funds  are  being  released  at  a  trickle,  not 
nearly  in  amounts  needed  to  stem  the  tide  of  an  epidemic  termed 
"the  number  one  health  priority  of  the  Public  Health  Service." 
None  of  the  funds  are  earmarked  for  education  or  patient  support. 

Federal  funds  are  needed  by  community  agencies  in  order  to 
enable  them  to  realistically  provide  support  to  people  with  AIDS 
and  their  respective  communities.  Major  cities  with  AIDS  problems 
such  as  Houston  and  Dallas  are  in  need  of  residences  halfway 
house,  social  services,  food  transportation,  and  nursing  services. 
Community  volunteer  groups  are  becoming  financially  strained. 
Funds  must  be  made  available  to  support  these  efforts. 

Evidence  of  grassroots  concern  is  supported  by  the  fact  that  na- 
tionally on  local  levels,  independently  nearly  40  AIDS  support  or- 
ganizations have  been  formed  over  the  past  year.  These  groups 
have  coalesced  to  form  a  national  AIDS  support  federation,  the  fed- 
eration of  AIDS-related  organizations.  Why  isn't  there  a  coordinat- 
ed response  from  governmental  health  agencies? 


193 

After  completing  the  investigation  and  assimilating  the  feelings 
of  many  individuals,  I  have  become  convinced  that  the  lack  of  re- 
sponse from  every  health  agency  in  this  country  is  intentional. 

Denial  of  the  problem  is  evidenced  by  the  fact  that  there  is  no 
workable  definition  of  AIDS.  Denial  of  the  problem's  magnitude  is 
evidenced  by  the  fact  that  there  are  no  effective  registries  operat- 
ing in  the  State.  Lack  of  concern  is  evidenced  by  the  fact  that  there 
is  no  support  of  organizations  which  provide  support  and  followup, 
nor  have  programs  been  implemented  which  could  stem  the  growth 
and  spread  of  the  epidemic.  The  disease,  although  renamed  AIDS, 
still  invokes  the  classical  response  toward  the  homosexual  commu- 
nity. "We  don't  care.  Furthermore,  drop  dead."  The  irony  of  this 
lack  of  response  by  the  Federal  Government  is  potentially  telling 
all  U.S.  citizens  to  drop  dead. 

I  thank  you  for  this  opportunity  for  presentation. 

Mr.  Weiss.  Thank  you  very  much. 

[The  prepared  statement  of  Mr.  Daire  follows:] 


194 

Prepared  Statement  of  Harold  P.  Daire,  Dallas,  Tex. 

Mr.  Chairmem  and  Members  of  the  Committee: 

My  name  is  Harold  Paul  Daire.   I  am  a  resident  of  Dallas,  Texas.   I 
am  a  licensed  mental  health  counselor  in  Texas,  I  am  Founder  and  Executive 
Director  of  the  OeUc  Lawn  Counseling  Center  in  Dallas,  Founder  and  Coordi- 
nator of  the  Oak  Lawn  Counseling  Center  AIDS  Program  in  Dallas,  co-founder 
euid  patient  support  chairman  of  the  Dallas  AIDS  Action  Project.   I  am  a 
member  of  the  Dallas  Gay  Alliance,  an  organization  which  maintains  an  AIDS 
Task  Force  for  the  Dallas  Community.   I  have  been  actively  involved  in 
local  public  health  issues  since  1980. 

Early  in  1980,  I  watched  while  a  friend  wasted  away  and  finaly  died 
of  a  rare  cancer  and  pneumonia.   The  case  was  baffling  to  medical  practi- 
tioners.  Since  then  I  have  experienced  the  loss  of  six  others.   I  have 
been  affected.   I  am  saddened,  I  am  afraid,  I  am  more  sensitive,  I  am 
concerned,  I  am  involved,  I  am  angry. 

AIDS  is  a  disease  which  is  relatively  new  to  us ,  bringing  with  it  new 
sets  of  problems.   Medical  scientists  are  puzzled.   Health  workers  are 
misinformed.   The  general  public  is  panic  stricken,  reacting  with  fear, 
paranoia  and  anger  towards  high  risk  group.   Those  defined  at  high  risk 
for  AIDS  are  rallied  in  concern,  pushing  themselves  beyond  points  of 
exhaustion  to  provide  assistance  and  support  to  one  another.   People  with 
AIDS  are  living  each  day  coping  with  moralistic  stigmas  attached  to  a 
medical  phenomenon,  hoping  each  new  day  will  uncover  clues  to  solve  the 
mystery,  yet  knowing  that  without  solutions,  each  new  day  brings  them  one 
day  closer  to  almost  certain  death. 

Solving  the  AIDS  problem  requires  response  and  coordination  of  resources 
at  all  levels  of  our  society.   We  are  dealing  with  a  medical  unknown  which 
has  vast  psychological  and  sociological  implications.   We  must  shut  the 
moral  door  and  deal  with  a  medical  issue  now,  non-judgmentally . 

In  Texas ,  many  efforts  are  being  undertaken  in  attempts  to  combat  the 
AIDS  problem.   Attempts  at  defining  the  problem  are  uncoordinated  and  by 
no  means  systematic.   A  federal  task  force  is  necessary  to  help  local  health 
officials  define  their  roles.   Local  health  care  delivery  systems  are 
straining  internal  resources  in  dealing  with  the  AIDS  registry  in  Dallas. 
There  is  no  registry  in  Houston.   Attempts  at  estimating  cases  in  San  Antonio 
were 'futile  with  numbers  fiihgrng '  from  ten  to  thirty  four  depiending  upon  whom 
I  contacted. 


195 


The  time  to  contain  the  growth  of  this  epidemic  is  now.   Not  two  years 
from  now.   It  is  imperative  that  community-wide  networks  be  established 
providing  surveillance,  health  care  and  follow-up.   In  dealing  with  AIDS, 
a  format  by  which  existing  agencies  could  provide  some  form  of  health 
services  is  in  place.   It  has  been  suggested  that  we  apply  strategies 
already  practiced  for  the  containment  of  Sexually  Transmitted  Diseases 
(S.T.D.s).   This  format  addresses  needs  without  antagonizing  confidentiality 
and  without  judging  lifestyle.   To  effectively  implement  the  program,  the 
resources  of  existing  structures  must  be  increased. 

The  definition  of  AIDS  must  be  reexamined.   The  current  Center  for 
Disease  Control  definition  addresses  only  those  people  with  AIDS  who  have 
developed  malignancies  or  opportunistic  infections.   Physicians  at  M.  D. 
Anderson  Hospital  in  Houston,  Texas  have  expanded  the  CDC  definition  to 
include  the  term  AIDS  Related  Complex.   This  has  enabled  the  physicians 
tjo  intervene  as  early  as  possible  in  order  to  affect  cure  or  remission. 
It  enables  health  officials  to  conduct  follow-up  on  exposed  individuals 
early,  allowing  staff  to  contact  those  individuals  who  are  at  risk, 
providing  them  with  information  necessary  to  contain  the  spread  of  AIDS. 
AIDS  Related  Complex  does  not  necessarily  develop  into  AIDS.   Some  recover 
from  the  symptoms  spontaneously. 

In  combatting  AIDS,  research  is  of  primary  importance.   However,  reason 
must  be  used  in  assigning  projects  which  may  be  harmful.   A  case  in  point: 
According  to  Dr.  Peter  Mansell  of  M.  D.  Anderson,  Houston,  chemotherapy  is 
not  the  first  treatment  of  choice  for  Kaposi's  Sarcoma  in  most  patients. 
Dr.  Evan  Hirsh  of  M.  D.  Anderson,  Houston,  stated,  "chemotherapy  is  often 
lethal  to  K.S./AIDS  patients.  .  .".  Both  recommended  the  use  of  Interferon 
drugs.   It  has  been  described  as  a  critical  issue  of  major  importance  that 
the  F.D.A.  approve  the  use  of  Interferon  without  randomized  clinical  trials. 
Patients  will  be  killed  using  the  trials.   Based  on  studies  in  San  Francisco, 
New  York,  Los  Angeles  and  Houston,  interferon  studies  are  the  same. 
Interferon  is  relatively  non-toxic.   It  is  important  to  advocate  the 
patient's  right  to  select  among  treatment  modalities  and  to  know  what  is 
being  dripped  into  their  veins. 

Along  the  lines  of  patient  support,  the  overriding  issue  in  Texas  stems 
from  the  destructive  effect  of  AIDS  on  a  person's  entire  social  network. 
People  with  AIDS  often  lose  jobs,  residences,  money,  friends  and  family. 


196 


In  Texas,  as  in  other  major  areas  of  the  U.S.,  commimities  have  orgemized 
groups  to  meet  patients s  psychosocial  needs  and  provide  education.   Unlike 
New  York  City,  San  Francisco  and  Los  Angeles,  organizations  in  Dallas  cind 
Houston  are  entirely  dependent  upon  private  contributions  to  fvmd  support 
services.   The  K.S./AIDS  Foundation  and  Committee  for  Public  Health  Aware- 
ness of  Houston,  the  Oak  Lawn  Coionseling  Center  AIDS  Project,  The  Dallas 
Gay  Alliance  and  the  Dallas  AIDS  Action  Project  have  been  hampered  in  their 
efforts  to  petition  for  state  and  municipal  funds  because  time  and  energy 
must  be  devoted  to  combat  antagonistic  groups  such  as  Dallas  Doctors  Against 
AIDS  and  Alert  Citizens  of  Texas.   Any  efforts  to  express  needs  for  state 
AIDS  funding  have  been  neutralized  by  the  negativism  of  these  groups. 

On  the  municipal  level,  community  organizations  have  petitioned  their 
cities  for  support.   How  the  cities  have  responded  so  far  amounts  to  little 
more  than  lip  service.   The  City  of  Dallas  passed  a  resolution  supporting 
the  need  for  the  release  of  Federal  funds.   The  City  of  Houston  appropriated 
$78,000  to  fund  a  state  mandated  AIDS  registry.   In  Houston,  the  funds  have 
not  become  available  nor  the  registry  established. 

On  a  national  level,  funds  are  being  released  at  a  trickle,  not 
nearly  in  amounts  needed  to  stem  the  tide  of  em  epidemic  termed  "the 
number  one  health  priority  of  the  Public  Health  Service."   None  of  the 
funds  are  earmarked  for  education  or  patient  support. 

Federal  funds  are  needed  by  community  agencies  in  order  to  enable  them 
to  realistically  provide  support  to  people  with  AIDS  and  their  respective 
communities.   Major  cities  with  AIDS  problems  such  as  Houston  and  Dallas 
are  in  need  of  residences,  halfway  houses,  social  services,  food,  trans- 
portation and  nursing  services.   Community  volunteer  groups  are  becoming 
financially  strained.   Funds  must  be  made  available  to  support  these 
efforts. 

Dallas  and  Houston  media  and  press  have  presented  balanced,  non- 
judgmental  coverage.   This  has  assisted  our  groups  in  maintaining  a  minimal 
level  of  paranoia  in  the  commxinity  which  is  being  created  by  Dallas  Doctors 
Against  AIDS  and  Alert  Citizens  of  Texas. 

Evidence  of  grass  roots  concern  is  supported  by  the  fact  that  across 
the  nation  at  local  levels,  nearly  40  independent  AIDS  support  organiza- 
tions have  been  formed  over  the  past  year.   These  groups  have  coalesced 
to  form  a  national  AIDS  support  federation  .  .  .  the  Federation  of  AIDS 
Related  Organizations.   Why  isn't  there  a  coordinated  response  from 
governmental  health  agencies? 


197 


After  completing  the  investigation  and  assimilating  the  feelings  of 
many  individuals,  I  have  become  convinced  that  the  lack  of  response  from 
every  health  agency  in  this  country  is  intentional. 

Denial  of  the  problem  is  evidenced  by  the  fact  that  there  is  no  work- 
able definition  of  AIDS.   Denial  of  the  problem's  magnitude  is  evidenced 
by  the  fact  that  there  are  no  effective  registries  operating  in  the  State. 
Lack  of  concern  is  evidenced  by  the  fact  that  there  is  no  support  of 
organizations  which  provide  support  and  follow-up,  nor  have  programs  been 
implemented  which  could  stem  the  growth  and  spread  of  the  epidemic.   The 
disease,  although  renamed  AIDS,  still  invokes  the  classical  response 
towards  the  homosexual  community.  .  ."We  don't  care.  .  .furthermore.  .  . 
drop  dead."  The  irony  of  this  lack  of  response  by  the  Federal  Government 
is  potentially  telling  all  U.S.  citizens  to.  .  ."Drop  dead." 


198 


OAK  LAWN  COUNSELING  CENTER 
A-j;.D.S..  Action  Project  -  Dallas 

21i;-528-2l8l 
The  AIDS  Action  Project  -  Dallas  consists  or  three  components 
(1)  Community  Education;  (2)  Clearinghouse;  (3)  Patient 
Support  Services.  Each  component  is  briefly  outlined  below 
with  an  indication  of  some  tasks  required  to  carry  out  the 
activities. 

I.  Community  Education 

A.  Target  group (ff)  -  The  Dallsa  and  North  Texas  gay 

community,  local  health  proresaionals, 
and  the:  medl&. 

B.  Objectivea 

1.  To  inform  target  groups  about:  a)  the  nature  and  extent 
of  the  AIDS  problem,  aspacially  in  the  Dallas  area; 

b)  the  steps  recommended/available  to  prevent,  detect, 
and  treal;  AIDS-ralated  conditions;  and  the  types 
of  services  available  in  the  Dallas  area.  • 

2.  To  motivate  target  groups  to:  a)  take  potentially 
appropriate  preventive  actions;  b)  seek  screening, 
diagnostic,  treatment  and  support  services  as  necessary; 
c)  support  the.  AIDS  Action  Project  through  fund  giving, 
voluntearing  or  other  assistance 

C.  Description  -  Major  elements  of  the  community  education 
program  include: 

1.  Distribution  of  educational  materials 

2.  Produce  quarterly  AIDS  Information  Forums 

5.  Provide  video  tapes  of  the  AIDS  Forums  and  other  AIDS 

information  for  viewing  at  the  OLCC. 
^.  Promote  articles,  news  reports,  end  public  service 

announcements  which  emphasize  accurate,  up-to-date, 

"non- judgemental"  and  balanced  information  about 

AIDS  and  AIDS  services. 


199 


II.  ClearinRfaouse 

A.  Target  group(s)  -  the  Dallas  metroplex  and  northern  Te-xas 

gay  community;  local  health  care  pro- 
fessionals and  facilities. 

B.  Objectives 

1.  To  collect  and  monitor  information  about  AIDS  medical 

cases^ 
2-  To  answer  community  inquiras  concerning  tha  AIDS 

problem,  available  services,  and  types  of  assistance 

community  members  can  provide  to  the  AIDS  Action   ^ 

Project. 

3.  To  refer  individuals-  to  screening,  diagnostic,  treatment, 
and  support  services  as  appropriate.. 

C.  Description  -  Major  clearinghouse  activities  include: 

1.  Establishment  of  an  ongoing  system  at  OLCC  for  reporting 
and  monitoring  of  AIDS  cases 

2.  Implementation  of  an  AIDS  Information  Line  to  answer 
community  inquiries,  refer  individuals  to  needed, 
services,  collect  possible  CHse  information,  and' 
and  respond  to  spaciail  requests  from  the  medical 
community. 

III.  Patient  Support  Services 

A.  Target  group (s)  -  those  diagnosed  as  having  acquired 

immune:  deficiencies  and/or  AIDS 
related  conditions;  family,  friends 
and.  loved  ones  of  AIDS  patients. 
B..  Objective 

1.  To  provide  a  coordinated  program  of  counseling  and 
social  support  services  for  target  group  members. 
C.  Description  -  services  will  be  provided  through  the 
OLCC  (but  not  necessarily  be  limited  to). 
1.  Individual  and  group  counseling  of  AIDS  patients, 
family  members,  friends,  and  loved  ones  to  assist 
them  to  "work  through"  the  stages  of  illness  and 
cope  with  the  medical  and  social  -  psychological 
implications  of  AIDS' 
2.  Establishment  of  a  "buddy  system"  for  AIDS  patients 

Under  this  system,  volunteers  would  be  trained  to  assess- 
patient  needs:  during  home  or  hospital  visits  and 
provide  support  services. 


200 

DALLAS  A.I.D.S.  ACTION  PROJECT 
(DAAP) 


To  Our  Friends  In  The  Community, 


The  Dallas  AIDS  Action  Project  (DAAP)  would  like  to  Invite 
you  to  join  us  on  Sunday,  June  19,  at  8:00  PM  at  the  Gran  Crystal 
Palace  in  Dallas  for  a  benefit  performance  by  Samantha  Samuels. 

Proceeds  from  this  event  will  be  used  to  fund  the  activities 
of  the  DAAP  in  the  Dallas  area.   These  activities  include: 

1)  Research  to  find  a  cure  for  AIDS 

2)  Education  to  increase  public  awareness  about  AIDS 

3)  Epidemiology  to  trace  the  epidemic  aspects  of  AIDS 

4)  Patient  support  to  assist  those  in  need  of  treatment 

I  know  that  you  feel  as  we  do  that  AIDS  is  a  frightening, 
malicious,  life-threatening  disease.   Since  the  government  is 
responding  very  slowly  in  providing  sufficient  funding  for  these 
projects,  the  private  sector  (you  and  I  and  the  entire  community) 
must  act,  and  we  must  act  immedlaitely ! 

Your  contribution  is  tax  deductible  and  will  be  greatly  ■ 
appreciated.   Please  contribute.   Please  help  end  the  nightmare 
of  AIDS.   Please  join  us  in  taking  action  now  against  AIDS. 


Sincerely  and  Urgently, 

Ed  Fugate,  Fuiyl  Raising  Director 
Dallas  AIDS  Action  Project 


TICKET  PRICE:  $10.00  per  person 

Make  Checks  Payable  to:  DAAP  (Dallas  AIDS  Action  Project) 

Pick  up  tickets  at:    (1)  Crossroads  Market  on  Cedar  Springs,  or 

(2)  Oak  Lawn  Mail  Services,  3S27  Oak  Lawn 
Call  for  more  Information:   521-8919  or  522-6900 


DAAP  COMMITTE  MEMBERS: 


Dr.  Jim  Wheeler,  Mark  Harris,  Terry  Tebedo, 

Al  Leviton,  Ed  Fugate,  Ed  Frick,  Paul  Fielding, 

Mike  Burnett,  Jerry  Campbell,  Howie  Daire, 

and  many  other  concerned  friends  in  the  community 


201 


Involvment  of  the  Dallas  Gay  Alliance  in  AIDS  in  Dallas 


Since  one  of  the  primary  purposes  of  the  Dallas  Gay  Alliance  is 
education,  we  strive  to  educate  the  gay  community  about  AIDS,  and 
how  it  affects  them.   We  have  published  three  brochures,  one  on 
what  is  known  about  AIDS,  one  on  blood  donations,  and  the  third 
is  on  safe  sex  practices. 

We  have  printed  approximately  15,000  of  the  first  AIDS  brochure, 
and  know  that  several  other  cities  in  Texas,  including  Houston  asked 
if  they  could  copy  it.  Funding  for  printing  was  from  the  Club  Baths 
and  AIDS  Action  Project. 

The  Blood  Bank  brochure  was  used  only  by  a  couple  of  blood  plasma 
centers,  because  shortly  after  meeting  with  all  the  blood  banks  in 
Dallas,  the  ABBA  came  out  with  their  own  guidelines,  and  they  have 
all  decided  to  use  them  in  some  form.   The  meeting  however,  with 
all  the  blood  banks  was  a  useful  exchange  of  information,  and  an 
opportunity  for  us  to  show  the  concern  that  the  gay  community  has 
for  this  problem,  and  that  we  wanted  to  cooperate  in  any  way  possible. 

Our  latest  brochure  on  safe  sex  practices  will  have  an  initial 
printing  of  10,000  copies,  and  will  be  funded  by  either/or  the 
Dallas  County  Health  Department   or  Dallas  Aids  Action  Project. 

We  also  undertook  a  petition  drive,  that  has  gotten  over  6,000 
signature  of  people  from  throughout  North  Texas  that  are  concerned 
about  AIDS,  and  requesting  that  congress  appropriate  funding  for 
research.   Copies  of  these  petitions  were  personally  delivered  to 
Martin  Frost  and  Steve  Bartlett.   John  Bryant  was  contacted,  and 
said  since  he  would  support  funding  that  we  did  not  need  to  send 
copies  of  the  signatures  to  him. 

The  Dallas  Gay  Alliance  met  with  Craig  Holcomb,  City  Councilperson, 
and  he  presented  a  resolution,  that  passed  unanimously,  and  called 
for  the  federal  government  to  fund  new  research  dollars  to  AIDS.  This 
was  the  first  southern  city  to  pass  such  a  resolution. 


Observations: 


The  biggest  problem  in  Dallas  now  is  the  fear  in  the  gay  community 
of  what  AIDS  is,  and  how  they  may  catch  it.  Many  of  us  have  instantly 
self  diagnosed  any  illness  as  AIDS,  and  this  fear  keeps  many  from 
being  well. 

Dallas  needs  money  for  research  projects  that  can  be  accomplished 
here  at  Southwestern  Medical  School.   The  funding  for  such  projects 
should  be  made  more  expediently  that  has  been  reported  in  the  past. 

We  also  need  money  for  support  services,  for  AIDS  patients,  and  those 
that  are  affected  by  the  loss  of  a  patient. 


Tom  Hatfield 


202 

INTRODUCTION  BY 
REPRESENTATIVE  BILL  CEVERHA 


On  August  17,  1982,  Federal  Judge  Jerry  Buchmeyer, 
declared  the  Texas  Sodomy  Law,  Section  21.06  of  the  Texas 
Penal  Code,  to  be  unconstitutional.   A  notice  of  appeal 
was  filed  by  Attorney  General  Mark  White,  on  November  1, 
1932.   On  March  11,  1983,  the  last  day  on  which  a  new  bill 
could  be  introduced  in  the  House  of  Representatives,  Attorney 
General  Jim  Mattox,  dropped  the  State's  appeal  of  the  Baker 
V.  Wade  decision.   In  dropping  the  appeal,  Mr.  Mattox  sug- 
gested  that  the  legislature  should  reintroduce  a  sodomy  law 
if  it  thought  it  was  in  the  public's  interest. 

The  Baker  v.  Wade  case  was  tried  in  June  of  1981.   No 
evidence  of  the  public  health  threat  caused  by  homosexual 
conduct  was  introduced  at  the  trial  court.   The  Attorney 
General  has  made  no  effort  to  ask  the  District  Court  to  re- 
open the  evidence  to  introduce  the  overwhelming  medical  evi- 
dence concerning  the  public  health  threat  caused  by  homo- 
sexual conduct. 

The  diseases  being  transmitted  by  homosexuals  and  being 
caught  by  homosexuals  dxiring  their  sexual  practices  threaten 
to  destroy  the  public  health  of  the  State  of  Texas.   One  of 
the  most  recent  and  deadly  diseases  is  Acquired  Immunological 
Deficiency  Syndrome  ("AIDS") .   Two  recent  articles  in  "Time" 
magazine,  March  28,  1983,  and  "Newsweek"  magazine,  April  18, 
1983,  confirm  the  deadly  consequences  of  AIDS.   Both  articles 
also  confirm  that  AIDS  first  occurred  in  the  homosexual  com- 
munity either  through  their  sexual  practices,  blood  donations 
or  through  close  contact  with  the  heterosexual  community. 

The  citizens  of  the  State  of  Texas  must  be  protected 
from  the  spread  of  AIDS  and  other  sexually- transmitted  diseases 
which  occur  as  a  result  of  homosexual  conduct.   House  Bill  2138 
has  been  introduced  for  the  purpose  of  preventing  and  deterring 
homosexual  conduct  which  causes  the  transmission  of  disease. 


CSH.B.  No.  2138 


203 


A  BILL  TO  BE  ENTITLED  AN  ACT 

relating  to  defming  deviate  sexual  intercourse,  sexual 
intercourse,  intimate  sexual  contact,  sexual  contact, 
homosexual  conduct,  pubbc  lewdness,  medical  purposes, 
and  defmmg  the  penalties  for  homosexual  conduct,  pub- 
lic lewdness,  mcluding  the  offering,  agreeing  with  or 
soliataiion  of  such  conduct;  providing  penalties  for 
homosexual  conduct  or  the  offenng,  agreemg  with  or 
solicitation  of  homosexual  conduct,  or  intimate  homo- 
sexual contact;  amending  the  Penal  Code.  Sections  21.01, 
21.04.  21.06.  21.07,  21.10.  21.11.  and  adding  thereto  a 
new  section  21.14,  and  declanng  an  emergency. 

BE  IT  ENACTED  BY  THE  LECrSLATUREOF  THE  STATE 
OFTE.XAS 

SECTION  1.  Section  21.01.  Penal  Code,  is  amended  to  read 
as  follows: 

21.01  Definiiions  in  this  chapter: 

(1)  "Deviate  sexual  intercourse"  means:  (A)  any  contact  be- 
tween jny  pjit  uf  the  genitals  ot  one  person  and  the  mouth  or 
anus  ot"  jnoiher  person,  oi  (B)  the  penetration  by  one  person  of 
the  genitals  or  the  anus  of  another  person  with  an  object,  except 
for  medical  purposes;  (C)  any  contact  belween  the  mouth  of  one 
person  and  the  anus  of  another  person;  or  (D)  the  penetration  by 
one  person  of  (he  genitals  or  the  anus  of  another  person  with  any 
portion  of  the  body  (mcluding,  by  way  of  example,  but  not  limi- 
tation, a  finger,  hand  or  foot),  except  that  any  penetration  of  the 
female  sex  organ  by  the  male  sex  organ  shall  not  be  included,  and 
except  for  medical  purposes. 

l2)  "Intimate  sexual  contact"  means  the  touching  by  one  per- 
son of  [he  anus,  breast,  or  any  pan  of  the  genitals  of  another  per- 
son with  the  intent  or  purpose  of  arousing  or  gratifying  the  sexual 
desire  of  any  person. 

(3)  'Sexual  contact"  means  the  touching  by  one  person  of 
jny  pari  of  the  body  of  another  person  with  the  intent  or  purpose 
of  arousing  or  Bjatifymg  the  sexual  desire  of  any  person. 

(4)  "Sexual  intercourse"  means  any  penetration  of  the  female 
icx  organ  by  the  male  sex  organ. 

i5)  "Medical  purposes"  means  any  medically  necessary  lieal- 
ment  by  or  ai  the  duection  of  a  physician  or  other  health  care 
practitioner  ln-ensed  to  practice  medicine  in  this  State. 

SECTION  2.  Section  21.04,  Penal  Code,  is  amended  to  read 
as  follows 

21.04.  Sexual  Abuse  (a)  .\  person  commits  an  offense  if. 
without  the  other  person's  consent  and  with  intent  to  arouse  or 
gratify  the  sexual  desire  of  any  person,  the  actor: 

(1)  engages  m  deviate  sexual  intercourse  with  the  other  per- 
son, not  hii  spouse,  whether  the  other  person  is  of  the  same  or 
opposite  sex.  (2)  compels  the  other  person  to  engage  in  sexual 
intercourse,  deviate  sexual  intercourse  or  intimate  sexual  contact 
with  3  third  person,  whether  the  other  person  is  of  the  same  sex 
as  or  opposite  sex  from  the  third  person,  ( 3)  engages  in  intimate 
sexual  contai:t  with  the  other  person,  not  his  spouse,  whether  the 
other  person  is  of  the  same  or  opposite  sex.  or  (4)  engages  m  sex- 
ual contact  with  the  other  person,  not  hjs  spouse,  whether  the 
other  person  is  of  the  same  or  opposite  sex. 

(b)  The  conduct  referred  to  in  subsection  (a)  is  without  the 
other  person's  consent  under  one  oi  more  of,  but  not  bmited  to, 
the  following  circumstances. 

( IJ  the  actor  compels  the  other  person  to  submit  or  participate 
by  force  that  overcomes  such  earnest  resistance  as  might  be 
reasonably  expected  under  the  circumstances;  (2)  the  actor  com- 
pels the  other  person  to  submil  or  participate  by  any  threat, 
communicated  by  actions,  words,  or  deeds,  that  would  prevent 
resistance  by  a  person  of  ordinary  resolution,  under  the  same  ot 
simitar  circumstances,  because  of  a  reasonable  fear  of  harm.  (3) 
the  other  person  has  not  consented  and  the  actor  knows  the 
other  person  is  unconscious  or  physically  unable  to  resist;  (4)  the 
actor  knows  that  as  a  result  of  mental  disease  or  defect  the  other 
person  is  at  the  time  of  the  act  incapable  either  of  appraising  ihc 
nature  of  the  act  or  of  resisting  it;  (5)  the  other  person  has  not 
consented  and  the  actor  Hnows  the  other  person  is  unaware  that 
the  act  IS  occurrmg;  (6)  the  actor  knows  thai  the  other  person 
submiis  Of  participates  because  of  the  erroneous  belief  that  he  is 
the  other  person's  spouse,  or  (7)  the  actor  has  intentionally  im- 
paired the  other  person's  power  to  appraise  or  control  the  other 
persons  conduct  by  admmisienng  any  substance  without  the 
other  person's  knowledge. 

SECTION  3.  Section  21.06.  Penal  Code,  is  amended 
to  read  as  follows: 

(a)  Deviate  Sexual  Intercourse 

(!)  A  person  commits  an  offense  if  he  engages  in 
deviate  sexual  intercourse  with  another  individual  of  the 
same  sex. 

(2}  An  offense  under  this  subsection  is  a  Class  A 
misdemeanor  unless  the  actor  has  previously  been  con- 
victed under  this  subsection  in  which  event  if  is  a  felony 
of  the  third  degree. 

(b)  Intimate  Sexual  Contact 

(1)  A  person  commits  an  offense  if  he  engages  in 
intimate  sexual  contact  with  another  individual  of  the 
same  sex. 

(2)  An  offense  under  this  subsection  is  a  Class  B 
misdemeanor  unless  the  actor  has  previously  been  con- 
victed under  this  subsection,  in  which  event  it  is  a  Class 
A  misdemeanor. 

SECTION  4.  Section  21.07,  Penal  Code,  is  amended  to  read 
as  follows 

21.07  PubUc  Lewdness 

(a)  A  person  commits  an  offense  if  he  knowingly  or  recklessly 
engages  in  any  of  the  following  acts  in  a  pubbc  place  or,  if  not  in 
a  pubbc  place,  he  is  reckless  about  whether  another  person  is 
present  who  will,  or  may.  be  offended  or  alarmed  by  his  act: 

(1)  an  act  of  sexual  intercourse.  (2)  an  act  of  deviate  sexual 
intercourse.  ( 3)  an  act  of  intimate  sexual  contact,  (4)  an  act  in- 
volving contact  between  the  person's  mouth  or  genitals  and  the 
anus  or  genilals  of  an  arumal  or  fowl. 

[Emphasis  added.] 


(b)  A  person  commits  an  offense  if  he  knowingly  or  recklessly 
engages  in  sexual  contact  with  a  pf'ison  of  thj  same  sex  in  a  putv 
lic  place  or,  if  not  in  a  public  place,  he  is  reckless  about  whether 
another  person  is  present  who  will,  or  may,  be  offended  or 
alarmed  by  his  act 

SECTION  5.  Section  21.11,  Penal  Code,  is  amended  to  read 
as  follows: 

21.11  Indecency  with  a  Child. 

(a)  A  person  commits  an  offense  if,  with  a  child  younger 
than  17  years  and  not  his  spouse,  whether  the  child  is  of  the 
same  or  opposite  sex,  he: 

(1)  engages  in  sexual  contact  or  intimate  sexual  contact  with 
the  child;  or  (2)  exposes  his  anus  or  any  part  of  his  genitals, 
knowing  the  child  is  present,  with  intent  to  arouse  or  gratify  the 
sexual  desire  of  any  person. 

(b)  It  IS  a  defense  to  prosecution  under  this  section  that  the 
child  was  at  the  time  of  the  alleged  offense  14  years  or  older  and 
had.  prior  to  the  time  of  the  alleged  offense,  engaged  promiscu- 
ously in: 

(1)  sexual  intercourse;  (2)  deviate  sexual  intercourse;  (3)  in- 
timate sexual  contact;  (4)  sexual  contact  or;  (5)  indecent  ex- 
posure as  defined  in  subsection  (a)(2)  of  this  section. 

(c)  It  IS  an  affirmative  defense  to  prosecution  under  this  sec- 
tion that  the  actor  was  not  more  than  two  years  older  than  the 
victim  and  of  the  opposite  sex. 

SECTION  6.  Chapter  21,  Penal  Code,  as  amended,  is 
amended  by  adding  thereto  Section  21.14  to  read  as 
follows; 

21.14.  Homosexual  Conduct  -  Offenng,  Agreemg,  or 
Soliciting 

(a)  Deviate  Sexual  Intercourse 

(J)  A  person  commits  an  offense  if  he  offers,  agrees 
with,  or  solicits  another  individual  of  the  same  sex  to  en- 
gage in  deviate  sexual  intercourse  for  the  purpose  of 
arousing  or  gratifying  the  sexual  desire  of  any  person. 

(2)  An  offense  under  this  subsection  is  a  Class  B 
misdemeanor  unless  the  actor  has  previously  been  con- 
victed under  this  subsection,  in  which  event  it  is  a  Class 
A  misdemeanor. 

(b)  Intimate  Sexual  Contact 

(I)  A  person  commits  an  offense  if  he  offers,  agrees 
with,  or  solicits  another  individual  of  the  same  sex  to  en- 
gage in  intimate  sexual  contact  for  the  purpose  of 
arousing  or  gratifying  the  sexual  desire  of  any  person. 

(2}  An  offense  under  this  subsection  is  a  Class  C 
misdemeanor  unless  the  actor  has  previously  been  con- 
victed under  this  subsection,  in  which  event  it  is  a  Class 
B  misdemeanor. 

SECTION  7.  The  importance  of  this  legislation  and 
the  crowded  condition  in  both  houses  create  an  emer- 
gency and  an  imperative  public  necessity  that  the  con- 
stitutional rule  requiring  bills  to  be  read  on  three  several 
days  in  each  house  be  suspended,  and  this  rule  is  hereby 
suspended,  and  this  Act  take  effect  and  be  in  force 
from  and  after  its  passage,  and  it  is  so  enacted. 

It  is  declared  that  deviate  sexual  intercourse,  intimate 
sexual  contact,  and  sexual  contact  as  defined  in  Section 
21.01  of  the  Texas  Penal  Code,  as  amended  hereby,  be- 
tween  persons  of  the  same  sex,  is  against  the  public 
policy  of  this  State,  iruismuch  as  such  acts  are  the  means 
for  the  transmission  of  diseases  which  threaten  the  health 
of  the  public  at  large,  inasmuch  as  such  acts  threaten  the 
public  safety  through  their  frequent  association  with 
violent  conduct,  inasmuch  as  such  acts  lead  to  and  result 
in  further  acts  against  the  policy  of  the  State,  and  inas- 
much as  such  acts  constitute,  contribute  to  and  promote 
immorality  and  indecency. 

It  is  further  declared  the  public  policy  of  this  State  to 
discourage  and  to  refrain  from  encouraging  or  promoting 
(to  the  full  extent  of  this  State 's  constitutional  power  to 
do  so)  the  promotion  of  the  practice  of  said  sexual 
practices  (deviate  sexual  Intercourse,  intimate  sexual 
conduct,  and  sexual  conduct}  between  persons  of  the 
same  sex  and  to  discourage  and  to  refrain  from  encour- 
aging or  promoting  (to  the  full  extent  of  this  State's 
constitutional  power  to  do  so),  the  placing  of  persons 
who  promote  or  engage  in  said  sexual  practices  between 
persons  of  the  same  sex  in  positions  of  public  trust  (in- 
cluding, but  not  limited  to.  positions  as  public  school 
teachers,  food  handlers  or  processors,  health  care  practi- 
tioners, public  safety  officers  or  any  other  position  cf 
public  leadership  or  responsibility). 

The  agencies,  pobtical  subdivisions,  officers,  em- 
ployees, schools,  colleges,  universities  and  other  mstru- 
mentalities  of  this  State  or  of  its  political  subdivisions 
are  hereby  directed  to  comply  with  the  pubbc  policy  of 
this  State  as  set  forth  in  Section  7  of  this  Act.  The  At- 
torney General,  all  district  attorneys,  City  attorneys  and 
law  enforcement  officers  of  thjs  State  are  hereby 
authorized  and  directed  to  defend  the  constitutionality 
of  this  Act,  to  enforce  this  act  and  the  public  policy  ex- 
pressed herein,  and  to  defend  this  State  and  the  agencies, 
political  subdivisions,  officers,  employees,  colleges,  uni- 
versities, and  other  instrumentahties  of  this  State  or  its 
political  subdivisions  in  their  actions  in  support  of  the 
pubbc  policies  of  this  Slate  as  expressed  in  this  Act.  This 
Act  shall  be  liverally  construed  to  carry  out  these 
objectives  and  purposes. 


204 


ACTION  ALERT! 

This  is  happening  to  you... 

THE  BILL  ON  THE  OTHER  SIDE  OF  THIS  SHEET  HAS  BEEN  INTRODUCED 

IN  THE  TEXAS  HOUSE  OF  REPRESENTATIVES  BY  BILL  CEVERHA  OF  RICHARDSON. 

IT  IS  NOW  BEING  CONSIDERED  BY  THE  CRIMINAL  JURISPRUDENCE  COMMITTEE. 

WHAT  YOU  CAN  DO 


YOU  CAN  HELP  US  DEFEAT  THIS  ATTEMPT  TO  INVADE  THE  PRIVACY  OF  ALL 

TEXANS  BY  WRITING  LETTERS  TO  THE  FOLLOWING  CRIMINAL  JURISPRUDENCE 

COMMITTEE  MEMBERS: 

Wayne  Peveto  --  chair 

Tom  Waldrop 

Terral  Smith 

Dick  Burnett 

Al  Granoff 

Joe  Hernandez 

Sam  Hudson 

James  Hury 

Debra  Danburg 

An  example  letter  would  be  (do  not  copy  exactly  since 
legislators  do  not  respond  well  to  form  letters.   Use  personal 
stationery,  not  an  organization's  letterhead): 


April  ,  1983 


The  Honorable ^_^ 

Texas  House  of  Representatives 
P.O.  Box  2910 
Austin,  Texas   78769 

Re:  House  Bill  2138 

Dear  Representative  


I  understand  that  you  will  be  considering  the  above 
bill  since  you  are  a  member  of  the  House  Criminal  Jurisprudence 
Committee.   I  urge  you  to  oppose  this  bill  because  it  represents 
a  major  invasion  of  the  privacy  of  all  Texans. 

Consensual  sexual  behavior  between  adults  in  private  is 
of  no  concern  to  the  State  of  Texas. 

(At  this  point,  although  it  is  not  necessary,  you  may  want  to 
add  your  personal  reasons  for  objecting  to  the  bill.   Keep  it  short 
and  to  the  point) 

Thank  you  for  your  consideration. 

Sincerely  yours, 

15)  Don't  delay;  Write  now    |^ 


205 


PO  Box  3045 
Houston.  Texas  77253 
(713)  529-0504 


Committee  for  Public  Health  Awareness 


The  purpose  of  this  organization  is  to  increase  public 
awareness  of  health  issues.  Achievement  of  this  goal 
will  come  through  education  of  people  as  individuals  and 
as  groups  in  business,  professional  organizations,  pri- 
vate institutions,  and  government  agencies.   Local,  state, 
and  national  governments  will  also  be  lobbied  on  specific 
health  issues  to  provide  adequate  research  funding  and 
necessary  health  services  for  all  citizens. 

The  following  projects  will  also  be  used  to  futher  public 
health  awareness i 

Educational  forums. 

Electronic  media  programs. 

Petition  drives  and  letter  campaigns. 

Briefing  of  political  leaders. 

Lobbying  for  health  related  legislation. 

Document  deviation  from  standard  policy  by  agencies. 

Networking  with  other  health  related  organizations. 

Our  funding  is  from  donations  and  projects  are  implemented 
as  funding  becomes  available.   If  you  are  interested  in 
participating  or  have  resources  or  helpfull  contacts, 
please  fill  out  a  membership  card.   Public  health  is  every- 
one's responsibility. 


26-097  O— 83 14 


206 

Mr.  Weiss.  Mr.  Collins. 

STATEMENT  OF  CHRISTOPHER  J.  COLLINS,  COOPERATING 
ATTORNEY,  LAMBDA  LEGAL  DEFENSE  AND  EDUCATION  FUND 

Mr.  Collins.  Mr.  Chairman  and  representatives  of  the  subcom- 
mittee, I  am  Christopher  J.  Collins,  a  cooperating  attorney  with 
Lambda  Legal  Defense  and  Education  Fund.  Lambda  is  a  national 
nonprofit,  tax-exempt  organization  whose  primary  goal  is  to  pro- 
mote and  protect  the  civil  rights  of  lesbians  and  gay  men  through 
litigation. 

I  am  a  member  of  the  Committee  on  Confidentiality  of  the  New 
York  City  AIDS  network,  and  am  director  of  the  St.  Mark's  Clinic, 
a  community  health  center  serving  the  lesbian  and  gay  community 
of  New  York  City. 

The  broad  issue  to  be  addressed  by  this  subcommittee  is  how  the 
Federal  Government  responds  to  the  overall  needs  of  disenfran- 
chised groups.  Specifically,  in  this  particular  instance  the  issue  to 
be  addressed  is  the  relationship  of  the  Government  to  three  disen- 
franchised groups  in  this  country:  gay  men,  Haitians  and  IV  drug 
users,  who  are  most  directly  affected  by  a  disease  known  as  ac- 
quired immune  deficiency  syndrome. 

The  specific  issue  I  wish  to  address  concerns  the  treatment  that 
is  to  be  afforded  confidential  information  that  is  submitted  by 
these  three  groups  to  governmental  agencies,  both  State  and  Feder- 
al, either  as  part  of  the  Government's  ongoing  surveillance  pro- 
gram of  AIDS  cases,  or  as  a  part  of  research  conducted  by  the  Gov- 
ernment or  private  institutions  and  researchers. 

How  has  the  Government  responded  to  the  needs  of  gay  men, 
Haitians,  and  drug  users  during  this  health  emergency? 

What  is  it  doing  to  combat  the  disease? 

And  what  information  is  the  Government  collecting  from  these 
groups  and  what  does  it  intend  to  do  with  that  information  once  it 
is  collected? 

This  last  question,  the  question  of  confidentiality,  is  the  subject 
of  this  presentation. 

For  at  least  the  past  year,  the  Centers  for  Disease  Control, 
through  local  health  departments,  has  been  collecting  a  vast  array 
of  information  concerning  patients  diagnosed  with  AIDS,  under  the 
pretext  of  doing  epidemiological  surveillance.  This  surveillance 
report  requests  information  relating  to  specific  conditions  and  op- 
portunistic infections,  other  infections,  signs  and  symptoms  prodro- 
mal to  AIDS,  diseases  or  conditions  preceding  or  coexisting  with  di- 
agnosis of  AIDS,  medical  immunosuppressive  therapy  and  labora- 
tory and  hospital  data. 

In  addition,  the  surveillance  report  requests  the  following  infor- 
mation: 

(1)  Name. 

(2)  Date  of  birth. 

(3)  Residence. 

(4)  Occupation. 

(5)  Marital  status. 

(6)  Living  arrangements. 

(7)  Immigration  status. 


207 

(8)  Parents'  origin  of  birth, 

(9)  The  use  of  needles  for  injection  of  nonprescription  drugs. 

(10)  Sexual  orientation. 

(11)  Pregnancy. 

(12)  During  the  previous  5  years  preceding  diagnosis  of  AIDS. 

(a)  Sexual  history  of  the  patient,  including  specific  sexual  prac- 
tices. 

(b)  Did  the  patient  receive  the  hepatitis  B  vaccine,  hepatitis  B 
immune  globulin,  other  immune  globulins,  factor  VIII  concentrate, 
cryoprecipitate,  factor  IX  concentrate,  blood  transfusion. 

(c)  Was  the  patient  in  jail  or  serving  a  jail  term. 

The  concern  of  the  gay  community  is  what  happens  to  this  infor- 
mation once  it  is  collected,  what  is  done  with  this  information,  who 
has  access  to  it  and  what  can  be  done  to  insure  that  access  to  that 
information  is  adequately  restricted  and  protected  from  disclosure 
to  unauthorized  personnel. 

The  obvious  reason  for  this  concern  is  that  the  Government,  spe- 
cifically the  CDC,  is  utilizing  a  surveillance  report  which  requests 
information  that  in  many  States  is  still  considered  illegal  and 
would  compromise  and/or  jeopardize  the  needs  of  a  person  with 
AIDS. 

For  instance,  in  Tennessee,  homosexuality  is  still  considered  a 
crime  which  carries  with  it  a  penalty  of  imprisonment  for  a  period 
of  tirne  not  to  exceed  1  year.  In  other  States,  the  use  of  nonpre- 
scriptive  intravenous  drugs  is  illegal. 

Many  Haitians  are  in  this  country  illegally,  which  simply  compli- 
cates the  reporting  problem  further.  The  paranoia  among  the  gen- 
eral population  amidst  cries  for  quarantine  and  imprisonment  by 
fringe  factions  in  this  country  have  further  added  to  the  need  for 
special  protection  of  this  information  to  insure  that  it  will  not  be 
used  in  the  future  to  satisfy  some  purely  arbitrary  need  of  one  or 
more  third  parties. 

Until  recently,  the  information  that  has  been  collected  on  per- 
sons diagnosed  with  AIDS,  together  with  the  information  identify- 
ing those  persons,  has  been  turned  over  by  most  local  health  de- 
partments to  the  CDC.  The  CDC,  in  turn,  on  at  least  three  separate 
occasions,  has  released  a  list  of  names  identifying  those  individuals 
diagnosed  as  having  AIDS  to  the  New  York  Blood  Center,  a  private 
institution  regulated  by  the  Office  of  Biologies  of  the  Department 
of  Health  and  Human  Services,  to  certain  individuals  involved  in 
the  so-called  Los  Angeles  cluster  study  and,  most  recently,  the  CDC 
has  released  its  national  list  of  people  with  AIDS  by  mistake  to  the 
New  York  City  Department  of  Health. 

In  addition,  until  recently,  the  CDC  regularly  released  the  names 
of  people  with  AIDS  in  each  State  to  that  State's  health  depart- 
ment, as  well  as  a  specific  city-wide  list  to  the  New  York  City 
Health  Department.  The  CDC  must  take  responsibility  for  its  ac- 
tions in  releasing  those  lists  to  unauthorized  personnel. 

We  believe  that  the  release  of  the  information  to  the  New  York 
Blood  Center  by  the  CDC  was  and  is  a  violation  of  Federal  law.  The 
apparent  justification  for  this  last  ongoing  breach  of  confidentiality 
was  that  a  comparison  of  national  AIDS  lists  with  a  list  of  those 
who  participated  in  the  New  York  Blood  Center's  program  for  the 
development  of  the  hepatitis  B  vaccine  would  be  useful  in  deter- 


208 

mining  any  possible  correlation  between  hepatitis  B  and  AIDS. 
Whether  or  not  this  is  so,  this  example  raises  a  number  of  impor- 
tant questions.  If  the  CDC  is  willing  to  turn  over  confidential  infor- 
mation to  a  nongovernmental  agency,  can  we  safely  assume  that 
they  will  not  make  this  same  information  available  to  governmen- 
tal agencies? 

Moreover,  once  that  information  has  been  released  to  a  private 
institution,  there  is  no  longer  any  control  over  that  information 
and  its  subsequent  distribution.  We  view  these  breaches  of  confi- 
dentiality with  the  utmost  gravity  and  suggest  that  these  are  the 
precise  reasons  why  the  present  surveillance  system  cannot  contin- 
ue in  its  present  form,  and  why  there  is  a  special  need  for  legisla- 
tion to  protect  records  and  information  collected  by  the  Govern- 
ment on  these  groups.  Our  concern  is  that  further  use  of  the  cur- 
rent surveillance  report  may  lead  to  additional  leaks. 

The  current  system  of  reporting  has  likely  resulted  in  significant 
underreporting  of  cases  by  physicians  and  institutions  who  simply 
do  not  trust  the  procedures  that  are  presently  in  place  to  maintain 
patient  confidentiality.  Physicians,  wary  of  their  obligation  to 
maintain  physician/patient  confidentiality,  are  loath  to  report 
cases  of  AIDS  when  they  know  that  confidentiality  cannot  be  main- 
tained. 

Patients,  some  of  whom  may  be  very  ill,  refuse  to  seek  medical 
assistance  for  fear  that  they  might  be  deported,  considered  gay, 
fired  from  their  jobs,  or  irrationally  tagged  with  the  stigma  of 
having  a  disease.  It  is  conceivable  that  false  information  is  being 
collected  on  patients  too  fearful  that  they  will  lose  their  jobs  or, 
worse  yet,  to  be  quarantined  or  isolated  by  the  Government. 

These  are  very  serious  issues  that  are  confronting  the  CDC  and 
the  medical  profession  which  will  not  go  away.  They  must  be  ad- 
dressed, and  adequate  assurances  must  be  provided  to  instill  confi- 
dence and  trust  that  patient  records  will  be  secure  from  disclosure 
to  third  parties  for  whatever  reason  absent  that  patient's  consent. 

What  we  would  propose  at  present — we  have  suggested  that  a 
statute  be  enacted,  legislation  be  enacted  to  protect  that  informa- 
tion that  is  obtained  from  these  patients,  not  be  disclosed  to  third 
parties  for  arbitrary  reasons. 

It  has  been  acknowledged  today  that  identifying  information  is 
arguably  needed  for  followup  study,  for  further  research,  for  com- 
parisons. And  no  one  is  objecting  to  that  possibility.  In  that  event 
the  need  to  protect  the  identifying  information  though  is  essential. 
We  propose  that  new  legislation  be  enacted  in  the  form  we  have 
attached  with  my  statement,  which  is  designed  to  protect  the  confi- 
dentiality of  information  collected  by  the  Federal  Government 
acting  on  its  own  or  through  local  governmental  agencies  or  insti- 
tutions. 

Such  a  statute  is  based  in  part  upon  prior  legislation  that  has 
been  adopted  by  Congress  to  protect  the  confidentiality  of  patient 
records  of  participants  in  federally  funded  drug  and  alcohol  abuse 
programs. 

Under  the  proposed  legislation,  records  of  the  identity,  diagnosis, 
prognosis,  or  treatment  of  any  patient  which  are  maintained  in 
connection  with  the  performance  of  surveillance  research  of  AIDS 
conducted,  regulated,  or  directly  or  indirectly  cited  by  any  depart- 


209 

ment  or  agency  of  the  United  States  shall  be  confidential,  and 
would  only  be  disclosed  under  certain  limited  exceptions  spelled 
out  in  the  statute. 

The  legislation  would  provide  that  the  information  could  only  be 
disclosed  in  one  of  three  ways,  pursuant  to  the  patient's  consent; 
where  written  consent  is  not  forthcoming  the  information  could  be 
disclosed  only  to  researchers  and  only  so  long  as  the  identifying  in- 
formation will  be  protected  by  those  researchers.  And  where  writ- 
ten consent — the  third  possibility  would  be  where  written  consent 
has  not  been  obtained,  the  information  could  be  disclosed  only  if 
authorized  pursuant  to  court  order  or  upon  a  showing  of  good  cause 
and  pursuant  to  prior  notice  to  the  subject  or  participant. 

The  proposed  legislation  would  provide  further  that  in  no  event 
may  the  information  be  used  to  initiate  or  substantiate  any  crimi- 
nal charges  against  the  patient  or  to  conduct  any  investigation  of  a 
patient. 

The  need  for  legislation  of  this  type  is  apparent  given  the  long 
history  of  abuse  that  we  have  seen.  The  need  is  heightened  by  the 
nature  of  the  disease  and  the  groups  principally  affected  by  this 
disease,  and  we  would  urge  its  passage.  It  is  respectfully  submitted 
that  confidentiality  of  records  regarding  AIDS  patients  and  AIDS 
research  is  a  very  serious  problem  which  must  be  addressed 
promptly. 

The  bottom  line  is  simple.  We  support  and  encourage  research. 
However,  the  Government  must  demonstrate  that  it  is  capable  of 
conducting  that  research  in  such  a  manner  that  it  will  protect  and 
not  jeopardize  the  health  of  the  human  subject  or  the  research  par- 
ticipant. Its  failure  to  do  so  will  continue  to  result  in  inaccurate 
reporting,  falsified  information,  and  a  general  mistrust  of  our  Gov- 
ernment iDy  all  of  its  citizens. 

I  thank  you  for  your  attention  and  consideration. 

Mr.  Weiss.  Thank  you  very  much,  Mr.  Collins. 

[The  prepared  statement  of  Mr.  Collins  follows:] 


210 


LAMBDA  LEGAL  DEFENSE  & 
EDUCATION  FUND,  INC. 

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Statement  of  Christopher  J.  Collins,  Esq. 

Cooperating  Attorney, 

Lambda  Legal  Defense  and  Education  Fund 


Presented  to  the  Intergovernmental  Relations 
and  Human  Resources  Subcommittee  of  the 
Committee  on  Government  Operations 
United  States  House  of  Representatives 
August,  1,  1983 


Mr.  Chairman  and  Representatives  of  the  Subcommittee  j,  I  am 
Christopher  J.  Collins,  a  cooperating  attorney  with  Lambda  Legal 
Defense  and  Education  Fund.   Lambda  is  a  national  non-profit, 
tax-exempt  organization  whose  primary  goal  is  to  promote  and  pro- 
tect the  civil  rights  of  lesbians  and  gay  men  through  litigation. 
I  am  a  member  of  the  Committee  on  Confidentiality  of  the  New  York 
City  AIDS  Network  and  am  Director  of  the  St.  Mark's  Clinic,  a 
community  health  center  serving  the  lesbian  and  gay  community  of 
New  York  City. 


211 


I.  The  Problem 

The  bcoad  issue  to  be  addressed  by  this  sub-committee  is  how 
the  federal  government  responds  to  the  overall  needs  of  disenfran- 
chised groups.   Specifically,  in  this  particular  instance  the 
issue  to  be  addressed  is  the  relationship  of  the  government  to 
three  disenfranchised  groups  in  this  country — gay  men,  Haitians 
and  IV  drug  users  who  are  most  directly  affected  by  a  disease 
known  as  acquired  immune  deficiency  syndrome  ("AIDS") . 

The  specific  issue  I  wish  to  address  concerns  the  treatment 
that  is  to  be  afforded  confidential  information  that  is  submitted 
by  these  three  groups  to  governmental  agencies — both  state  and 
federal — either  as  part  of  the  government's  on-going  surveillance 
program  of  AIDS  cases,  or  as  a  part  of  research  conducted  by  the 
government  or  private  institutions  and  researchers. 

How  has  the  government  responded  to  the  needs  of  gay  men, 
Haitians  and  drug  users  during  this  health  emergency?  What  is  it 
doing  to  combat  the  disease?  And,  what  information  is  the  govern- 
ment collecting  from  these  groups  and  what  does  it  intend  to  do 
with  that  information  once  it  is  collected?   This  last  question — 
the  issue  of  confidentiality — is  the  subject  of  this  presentation. 

II.  The  History  of  the  Problem 

For  at  least  the  past  year,  the  Center  for  Disease  Control 
("CDC") ,  through  local  health  departments,  has  been  collecting  a 
vast  array  of  information  concerning  patients  diagnosed  with  AIDS, 
under  the  pretext  of  doing  epidemiological  surveillance.   (Attached 
is  a  Case  Report  Form  used  by  the  CDC.)   This  "surveillance  report" 
requests  information  relating  to  specific  conditions  and  opportun- 


212 


istic  infections,  other  infections,  signs  and  symptoms  prodromal 
to  AIDS,  diseases  or  conditions  preceding  or  coexisting  with  diag- 
nosis of  AIDS,  medical  immunosuppressive  therapy  and  laboratory 
and  hospital  data.   In  addition,  the  "surveillance  report"  requests 
the  following  information: 

1 .  name ; 

2.  date  of  birth; 

3.  residence; 

4.  occupation; 

5.  marital  status; 

6.  living  arrangements; 

7.  immigration  status; 

8.  parents'  origin  of  birth; 

9.  the  use  of  needles  for  injection  of  non- 
prescription drugs; 

10.  sexual  orientation; 

11.  pregnancy; 

12.  during  the  previous  five  years  preceding 
diagnosis  of  AIDS: 

a.  sexual  history  of  the  patient,  including 
specific  sexual  practices; 

b.  did  the  patient  receive  the  hepatitis  B 
vaccine,  hepatitis  B  immune  globulin, 
other  immune  globulins,  Factor  VIII  con- 
centrate, cryoprecipitate.  Factor  IX  con- 
centrate, blood  transfusion; 

c.  was  the  patient  in  jail  or  serving  a  jail 
term. 

The  concern  of  the  gay  community  is  what  happens  to  this 
information  once  it  is  collected,  what  is  done  with  this  informa- 
tion, who  has  access  to  it  and  what  can  be  done  to  insure  that 
access  to  that  information  is  adequately  restricted  and  protected 
from  disclosure  to  unauthorized  personnel.*   The  obvious  reason 


♦Serious  thought  must  be  given  to  whether  or  not  this  information 
is  even  essential  or  relevant  to  an  understanding  of  AIDS.   It  is 
submitted  that  this  "information"  has  little,  if  any,  practical 
relevance  in  research  relating  to  AIDS.   Questions  such  as  what 
is  the  sexual  orientation  of  this  patient  raise  issues  that  are 
subjective  in  nature  and  provide  no  hard  basis  for  scientific 
study.   What  is  the  difference  between  homosexuality  and  bisexual- 
ity? 


213 


for  this  concern  is  that  the  government,  specifically  the  CDC,  is 
utilizing  a  surveillance  report  which  requests  information  that 
in  many  states  is  still  considered  illegal  and  would  compromise 
and/or  jeopardize  the  needs  of  a  person  with  AIDS.   For  instance, 
in  Tennessee,  homosexuality  is  still  considered  a  crime  which 
carries  with  it  a  penalty  of  imprisonment  for  a  period  of  time 
not  to  exceed  ■tiffeaGtv-year^f   In  other  states,  the  use  of  nonpre- 
scriptive  intraveneous  drugs  is  illegal.   Many  Haitians  are  in 
this  country  illegally,  which  simply  complicates  the  reporting 
problem  further.   The  paranoia  among  the  general  population  amidst 
cries  for  quarantine  and  imprisonment  by  fringe  factions  in  this 
country  have  further  added  to  the  need  for  special  protection  of 
this  information  to  insure  that  it  will  not  be  used  in  the  future 
to  satisfy  some  purely  arbitrary  need  of  one  or  more  third  parties. 
(See  The  New  Republic,  August  1,  1983,  "The  Politics  of  a  Plague," 
p.  18.)   • 

Until  recently,  the  information  that  has  been  collected  on 
persons  diagnosed  with  AIDS  together  with  the  information  identify- 
ing those  persons  has  been  turned  over  by  most  local  health  depart- 
ments to  the  CDC.   The  CDC,  in  turn,  on  at  least  three  separate 
occasions,  has  released  a  list  of  names  identifying  those  individ- 
uals diagnosed  as  having  AIDS — to  the  New  York  Blood  Center  (a 
private  institution  regulated  by  the  Office  of  Biologies  of  the 
Department  of  Health  and  Human  Services) ,  to  certain  individuals 
involved  in  the  so-called  Los  Angeles  cluster  study  and,  most 
recently,  the  CDC  has  released  its  national  list  of  people  with 
AIDS  by  mistake  to  the  New  York  City  Department  of  Health.   In 


214 


addition,  until  recently,  the  CDC  regularly  released  the  names  of 
people  with  AIDS  in  each  state  to  that  state's  health  deoartment, 
as  well  as  a  specific  city-wide  list  to  the  New  York  City  Health 
Department.   The  CDC  must  take  responsibility  for  its  actions  in 
releasing  these  lists  to  unauthorized  personnel. 

We  believe  that  the  release  of  the  information  to  the  New 
York  Blood  Center  by  the  CDC  was  and  is  a  violation  of  federal 
law,  5  U.S.C.A.  §552a(b).   The  apparent  justification  for  this 
astounding  breach  of  confidentiality  was  that  a  comparison  of  the 
national  AIDS  list  with  a  list  of  those  who  participated  in  the 
New  York  Blood  Center's  program  for  the  development  of  the  hepa- 
titis B  vaccine  would  be  useful  in  determining  any  possible  cor- 
relation between  hepatitis  B  and  AIDS.   Whether  or  not  this  is 
so,  this  example  raises  a  number  of  important  questions.   If  the 
CDC  is  willing  to  turn  over  confidential  information  to  a  non- 
governmental agency,  can  we  safely  assume  that  they  will  not  make 
this  same  information  available  to  governmental  agencies?   Moreover, 
once  that  information  has  been  released  to  a  private  institution 
there  is  no  longer  any  control  over  that  information  and  its  subse- 
quent distribution.   We  view  these  breaches  of  confidentiality 
with  the  utmost  gravity  and  suggest  that  these  are  the  precise 
reasons  why  the  present  "surveillance"  system  cannot  continue  in 
its  present  form,  and  why  there  is  a  special  need  for  legislation 
to  protect  records  and  information  collected  by  the  government  on 
these  groups.   Our  concern  is  that  further  use  of  the  current 
surveillance  report  may  lead  to  additional  "leaks." 


215 


IH .   Why  Is  Confidentiality  an  Issue? 

The  current  system  of  reporting  has  likely  resulted  in  sig- 
nificant underreporting  of  cases  by  physicians  and  institutions 
who  simply  do  not  trust  the  procedures  that  are  presently  in  place 
to  maintain  patient  confidentiality.   Physicians,  wary  of  their 
obligation  to  maintain  physician/patient  confidentiality,  are 
loath  to  report  cases  of  AIDS  when  they  know  that  confidentiality 
cannot  be  maintained. 

Patients,  some  of  whom  may  be  very  ill,  refuse  to  seek  medical 
assistance  for  fear  that  they  might  be  deported,  considered  gay, 
fired  from  their  jobs,  or  irrationally  tagged  with  the  stigma  of 
having  a  disease.   It  is  conceivable  that  false  information  is 
being  collected  on  patients  too  fearful  that  they  will  lose  their 
jobs,  or  worse  yet,  be  quarantined  or  isolated  by  the  government. 
These  are  very  serious  issues  that  are  confronting  the  CDC  and 
the  medical  profession  which  will  not  go  away.   They  must  be  ad- 
dressed, and  adequate  assurances  must  be  provided  to  instill  confi- 
dence and  trust  that  patient  records  will  be  secure  from  disclosure 
to  third  parties  for  whatever  reason  absent  that  patient's  consent. 
IV.   Surveillance  vs.  Research 

The  present  report  used  by  the  CDC  is  of  questionable  value. 
That  is  a  question  for  this  sub-committee  and  the  medical  profession 
and  I  only  raise  this  issue  to  heighten  the  overall  significance 
of  the  problem. 

Moreover,  the  need  for  this  type  of  information  by  the  CDC 
for  its  surveillance  function  is  also  questionable.   On  its  face, 
the  "surveillance  report"  is  actually  a  research  tool.   In  order 


216 


to  undertake  its  arguably  mandated  duty  of  surveillance,  the  CDC 
has  no  need  for  accumulating  the  kind  of  data  sought  in  the  "sur- 
veillance report."   Rather,  it  merely  needs  to  know  the  number 
and  type  of  cases  that  are  being  reported. 

If,  however,  the  CDC  is  engaged  in  epidemiological  research, 
then  the  information  may  possibly  become  more  relevant.   In  either 
case,  the  need  to  protect  the  information  that  is  solicited  and 
obtained  is  apparent  and  must  be  resolved. 
V.   Proposals 

1.   Surveillance 

Where  the  information  collected  by  the  CDC  emanates  purely 
from  the  CDC's  surveillance  function,  then  we  would  propose  that 
no  identifying  information  be  collected.   It  is  that  simple.   There 
is  no  need  for  data  identifying  AIDS  patients  when  the  information 
is  provided  for  strictly  surveillance  purposes.   Accordingly, 
instead  of  collecting  the  information  that  is  presently  being 
accumulated,  we  would  propose  that  the  following  information  be 
collected: 

1.  first,  middle  and  last  initials  of  the  person 
diagnosed  with  having  AIDS; 

2.  birth  date; 

3.  place  of  birth; 

4.  sex; 

5.  race; 

6.  diagnosis; 

7.  onset  of  symptoms; 

8.  date  of  report; 

9.  reporter  and  telephone  number  of  reporter; 
10.   mother's  maiden  last  name. 

We  believe  that  identifying  information  can  be  properly  safe- 
guarded at  the  site  where  the  diagnosis  of  AIDS  is  made  (e.g., 
hospital  or  physician's  office).   This  adequately  safeguards  the 


217 


patient's  right  to  privacy  and  alleviates  physician's  concerns 
regarding  physician/patient  confidentiality.   At  present,  the 
health  department  in  Washington,  D.C,  is  requiring  physicians  to 
report  only  initials,  date  of  birth,  city  of  residence  and  report- 
ing physician  in  cases  where  there  has  been  a  diagnosis  of  AIDS. 
The  precedent  is  there  for  this  type  of  reporting  and  it  should 
be  implemented  by  the  CDC  nationwide. 

2.   Research 

Where  the  information  sought  emanates  from  a  research  function, 
then  identifying  information  is  arguably  needed  for  follow-up 
studies,  further  research,  etc.   In  that  event,  the  need  to  protect 
that  identifying  information  is  essential.   We  propose  that  new 
legislation  be  enacted  in  the  form  attached  hereto  which  is  designed 
to  protect  the  confidentiality  of  the  information  collected  by 
the  federal  government  acting  on  its  own  or  through  local  govern- 
mental agencies  and  institutions. 

Such  a  statute  is  based  in  part  on  prior  legislation  that 
has  been  adopted  by  Congress  to  protect  the  confidentiality  of 
patient  records  of  participants  in  federally  funded  drug  and  alco- 
hol abuse  programs.   (See  21  U.S.C.  11174.)   Under  the  proposed 
legislation  records  of  the  identity,  diagnosis,  prognosis  or  treat- 
ment of  any  patient  which  are  maintained  in  connection  with  the 
performance  of  surveillance  or  research  of  AIDS  conducted,  regu- 
lated, or  directly  or  indirectly  assisted  by  any  department  or 
agency  of  the  United  States  shall  be  confidential  and  would  only 
be  disclosed  under  limited  circumstances.   (See  subsection  (a)  of 
the  proposed  legislation  which  is  attached.)   The  legislation  would 


218 


provide  that  the  information  could  only  be  disclosed  in  one  of 
three  ways:  (1)  pursuant  to  the  patient's  written  consent,  (2) 
where  written  consent  is  not  forthcoming,  the  information  could 
be  disclosed  only  to  researchers  and  only  so  long  as  the  identify- 
ing information  has  been  removed,  and  (3)  where  written  consent 
has  not  been  obtained,  the  information  may  be  disclosed  only  if 
authorized  pursuant  to  a  court  order  upon  a  showing  of  good  cause. 
(See  subsection  (b)  of  the  proposed  legislation.) 

The  proposed  legislation  would  further  provide  that  in  no 
event  may  the  information  be  used  to  initiate  or  substantiate  any 
criminal  charges  against  a  patient  or  to  conduct  any  investigation 
of  a  patient.   (See  subsection  (c)  of  the  proposed  legislation.) 
Severe  penalties  would  be  authorized  for  any  violations  of  the 
legislation.   Finally,  the  legislation  would  require  that  the 
Secretary  of  Health  and  Human  Services  consult  with  the  heads  of 
other  agencies  affected  by  AIDS  to  promulgate  regulations  designed 
to  carry  out  the  purposes  of  this  legislation.   The  Secretary 
would  be  required  to  -prescribe  regulations  establishing  procedures 
to  insure  that  all  surveillance  and  research  be  carried  out  only 
with  the  full  and  informed  consent  of  the  patient  or  subject. 
(See  subsection  (f)  of  the  proposed  legislation.) 

The  need  for  legislation  of  this  type  is  apparent  given  the 
long  history  of  abuse  by  the  federal  government  in  this  area. 
The  need  is  heightened  by  the  nature  of  the  disease  and  groups 
principally  affected  by  the  disease.   We  urge  its  passage. 


219 


CONCLUSION 


It  is  respectfully  submitted  that  confidentiality  of  records 
regarding  AIDS  patients  and  AIDS  research  is  a  very  serious  problem 
which  must  be  addressed  promptly.   The  bottom  line  is  simple:  we 
support  and  encourage  research.   However,  the  government  must 
demonstrate  that  it  is  capable  of  conducting  that  research  in 
such  a  manner  that  will  protect  and  not  jeopardize  the  health  of 
the  human  subject  or  research  participant.   Its  failure  to  do  so 
will  continue  to  result  in  inaccurate  reporting,  falsified  informa- 
tion and  a  general  mistrust  of  our  government  by  all  of  its  citizens, 
Thank  you  for  your  attention  and  consideration. 


220 


PROPOSED  STATUTE  ON 
CONFIDENTIALITY  OF  PATIENT  RECORDS 

Disclosure  authorization 

(a)  Records  of  the  identity,  diagnosis,  prognosis,  or 
treatment  of  any  patient  which  are  maintained  in  connection 
with  the  performance  of  any  surveillance  or  research  of 
AIDS  (Acquired  Immune  Deficiency  Syndrome)  conducted, 
regulated,  or  directly  or  indirectly  assisted  by  an  depart- 
ment or  agency  of  the  United  States  shall  be  confidential 
and  be  disclosed  only  for  the  purposes  and  under  the  cir- 
cumstances expressly  authorized  under  subsection  (b)  of 
this  section. 


Purposes  and  circumstances  of  disclosure  affecting  consenting 
patient  and  patient  regardless  of  consent 


(b)  (1)  The  content  of  any  record  referred  to  in  sub- 
section (a)  of  this  section  may  be  disclosed  in  accordance 
with  the  prior  written  consent  of  the  patient  with  respect 
to  whom  such  record  is  maintained,  but  only  to  such  extent, 
under  such  circumstances,  and  for  such  purposes  as  may  be 
allowed  under  regulations  prescribed  pursuant  to  subsection 
(f)  of  this  section. 


-1- 


221 


(2)  Whether  or  not  the  patient,  with  respect  to  whom  any  given 
record  referred  to  in  subsection  (a)  of  this  section  is  maintained, 
gives  his  written  consent,  the  content  of  such  record  may  be  disclosed 
as  follows: 

(A)  To  qualified  personnel  for  the  purpose  of  conducting 
scientific  research,  management  audits,  financial  audits,  or  program 
evaluation  upon  30  days  prior  written  notice  to  the  patient  at  his  or 
her  last  known  address,  but  in  any  event,  such  personnel  may  not 
identify,  directly  or  indirectly,  any  individual  patient  in  any  report 
of  such  research,  audit,  or  evaluation,  or  otherwise  disclose  patient 
identities  in  any  manner. 

(B)  If  authorized  by  an  appropriate  order  of  a  court  of  competent 
jurisdiction  granted  after  appiclation  showing  good  cause  therefor. 
The  patient  or  research  subject  should  be  afforded  a  reasonable  op- 
portunity to  participate  in,  or  object  to,  the  application.   In  assessing 
good  cause  the  court  shall  weigh   the  public  interest  and  the  need  for 
disclosure  against  the  injury  to  the  patient/research  subject,  to  the 
physician-patient  relationship,  and  to  the  treatment  services.   Upon 
granting  of  such  order,  the  court,  in  determining  the  extent  to  which 
any  disclousure  of  all  or  any  part  of  any  record  is  necessary,  shall 
impose  appropriate  safeguards  against  unauthorized  disclosure. 


-2- 


26-097  0—83 15 


222 


Prohibition  against  use  of  record  in  making  criminal 
charges  or  investigation  of  patient 


(c)  No  record  referred  to  in  subsection  (a)  of  this 
section  may  be  used  to  initiate  or  substantiate  any  criminal 
charges  against  a  patient  or  to  conduct  any  investigation  of 
a  patient. 


Continuing  prohibition  against  disclosure  irrespective 
of  status  as  patient 


(d)  The  prohibitions  of  this  section  continue  to  apply 
to  records  concerning  any  individual  who  has  been  a  patient, 
irrespective  of  whether  or  when  he  ceases  to  be  a  patient. 

Penalty  for  first  and  subsequent  offenses 

(e)  Any  person  who  violates  any  provision  of  this  section 
or  any  regulation  issued  pursuant  to  this  section  shall  be 
fined  not  more  than  $5,000  in  the  case  of  a  first  offense, 

and  not  more  than  $10,000  in  the  case  of  each  subsequent  offense. 


-3- 


223 


Regulations;  interagency  consultations;  definitions,  safeguards, 
and  procedures,  including  procedures  and  criteria 
for  issuance  and  scope  of  orders 


(f)  The  Secretary  of  Health  and  Human  Services,  after 
consultation  with  the  heads  of  other  Federal  departments  and 
agencies  substantially  affected  thereby,  shall  prescribe 
regulations  to  carry  out  the  purposes  of  this  section.  These 
regulations  may  contain  such  definitions,  and  may  provide  for 
such  safeguards  and  procedures,  including  procedures  and 
criteria  for  the  issuance  and  scope  of  orders  under  subsection 
(b)  (2)  (C)  of  this  section,  as  in  the  judgement  of  the  Secretary 
are  necessary  or  proper  to  effectuate  the  purposes  of  this 
section,  to  prevent  circumvention  or  evasion  thereof,  or  to 
facilitate  compliance  therewith.  The  Secretary  shall  prescribe 
regulations  establishing  procedures  to  insure  that  all  sur- 
veillance and  research  be  carried  out  only  with  the  full  and 
informed  consent  of  the  patient  or  subject  or,  in  appropriate 
cases  a  designated  representative  thereof. 


-4- 


224 


9 

10 


STATE  OF  NEW  YORK 


8197 


1983-1984  Regular  Sessions 


IN  ASSEMBLY 

June  26,    1983 


larroduced-  hy     COMMrTTEE  01*  ROEES   —  (ac  request  of  M.  of  A.  Ta! 
Bianchi,  Siegel,  Bragtnan,  Catapano,  D'Amaco,   Daniels,   Dugan,   Ei 
Flanagan,   Goldstein,   Gottfried,   Grannis ,  Harer.berg,  Hevesi!  Hil 
Jacobs,  Jenkins,  KoppeU,  Lashar,  Marchiselli,  M.  H.  Miller,  Murt^^^u-, 
Nadler,   Newburger,   Orazio,  Passannante ,  PiUictere,  Robles,  Sanders! 
Schirnroinger.  Serrano,  Tsnko ,  Vann,  Vertz,  Vilsort,  icvoli)  --  read  once 
and  referred  to  the  Committee  on  Health 

AN  ACT  to  amend  a  chapter  of  the  laws  of  nineteen  hundred  eighty-three, 
amending  the  public  health  law  relating  to  acquired  immune  deficiency 
syndrome  (AIDS),  as  proposed  in  legislative  bill  no.  S.  5930,  in  rela- 
tion to  further  amending  the  public  health  law  by  creating  the  ac- 
quired immune  deficiency  syndrome  inscicuta  and  r.a.kmg  appropriations 
therefor 


Hi® Peocle  of  the  State  of  NV.w  York,  represent: -10  m  Sonare  and  Assem- 
bly, do  enact  as  follows: 

1  Section  1.  Sections  two  through  eleven  and  section  thirteen  of  a  chap- 

2  ter  of  the  laws  of  nineteen  hundred  eighty-three,   amending   the   public 

3  health   law,   relating  to  acquired  immune  deficiency  syndrome  (AIDS)   as 

4  proposed  in  legislative  bill  no.  S.  5930,  are  R£PZALED,  and  a  new  sec- 

5  tion  two  is  added  to  read  as  follows: 

6  §  2. 


The  public  health  law  is  amended  by  adding  a  now  article  twenty- 


7  seven-E  to  read  as  follows: 

8  ARTICLE  27 -E 
THE  ACQUIRED  I.MMUNE  DEFICIE.NCY  SYNDROME  INSTITUTE 

Section  2775.  The  acquired  immune  deficiency  syndrome  institute. 
H  2776.  Powers  and  duties. 

12  2777 .'Research  council. 

13  2778.  Advisory  council. 

1^  2779.  Reports  by  the  commissioner. 

1^     §  2775.  The  acquired  immune  deficiency  syndrome  institute.  1.  There  is 

^^  hereby  established  within  the  department  of  health  the   acquired  immune 

^  deficiency  syndrome   institute.   The   institute  shall  have  the  central 

EXPLANATION— Matter  in  italics  (underscored)  is  new;  matter  in  brackets 

(  ]  is  old  law  to  be  omitted. 

LBD10759-IO-3 


225 


iO 


A.  8197 


1  responsibility  for  administering  the  provisions  of  this   article  and 

2-  otherwise  coordinating  the  state's  policies  with  respect  to  acquired  int- 

3  mtjne  deficiency  syndrome.  ""  ' 

^  2.   The  commissioner  shall  appoint  a  director  of  the  institute  and  may 

5  assign  such  personnel  within  the  amounts- appropriated  as  is  necessary  to 

fy  carry  out  tha  provisions  of  this  article. 

^  §  2776.   Powers  and  duties.  1.  The  institute  shall  have  the  following 

i  powers  and  datiear  ,   .-  -  .^-.„,.^.,  y.-.^  .  -  .     ~  ~     ' 

I  ill to  develop  and  promote  scientific  investigations  into  the  cause. 

prevention,  methods  of  treatment,  and  cure  of  the  acquired  diseases  of 

'.  1  immtmosuppression;                       ~~  ~~                ' 

l^  W      ^° develop'  and,  promote  programs  of  professional  education  and 

'■^  training  and  improvements  in  instrumentation  as   necessary   adjuncts   to 

14.  sucb  »c£encig£e  fiitfeseigations-   /   ■-  ■  "7"""  -  -,'„,■  ~~~"  '  

':?  C*^)  tg  develop-  and  maintain  a  clearing  house  within  the  department  for 

■°  information  collected  on  acquired  immune  deficiency  syndrome.   including 

'^^  a  catalogue  of  the  existing  medical  literature  and  the  results  of  exis't- 

13  ing  epidemiological  studiesT     ',                               '             '      ' 

■^     1A5 to   develop   and   promote   an   outreach   campaign  directed  toward 

-^   targeted high  risk,  populations   to  provide  coordinated  information 

-1  regarding  the  treatment  and  counseling  programs  and  sources  of  financial 

~2  assistance  available;  and '                    ~              ~ 

^^  to  promote  the  availability  of  supportive  services  for  affected 
persons.  ~     ~  ~  ~~ 


2.  Personal  data  in.  any  investigations,  reports  and  information  relat- 
ing thereto  shall  be  kept   confidential  and  be   afforded  all  of   the 


protections  provided  bv  the  provisions  of  paragraph  f|)  of  s-uodivision 
one  of  section  two  hundred  si.x  of  the  public  health  lau.  The,  institute 
may,  however,  from  time  to  time  publish  analyses  of  such  scientific  in- 
vestigations in  such  a  manner  as  to  assure  tnat  the  identities  of  the 
individuals  concerned  cannot  be  ascertained. 

§  2777.  Research  council.  1.  There  shall  be  established  within  the  in- 
stitute a  research  council  composed  of  seven  members  to  be  appointed  by 
the  commissioner.  The  members  shall  be  representative  of  recognized  cen- 
ters engaged  in  Che  scientific  investigation  of  acquired  immunosuppres- 
sive diseasesT  

.1^ "H^e-  research   council  shall  be ' responsible 'for  making  racommenda- 

tions  to  the  institute  for  the  purpose  of  carrying  out  the  provisions  of 
paragraphs (a)  and  (h)  of  subdivision  one  of  section-  twenty-seven  hun- 
dred seventy-six  of  this  articleT       ~  "~ 

3.  The  council  shall  meet  at  least  four  times  a  year.  Special  meetings 
may  oe  called  bv  the  chairman,  and  shall  be  called  by  hiar  at  the  request 
of  the  commissioner. ~  '  

^ — The  members  of  the  council  shall  receive  no  cc -.pensation  for  their 
services.  but«shall  be  allowed  their  actual  and  necessary  e.xpenses  in- 
curred in  the  performance  of  their  duties  hereunder. 

§  2778.  .Advisor-/  council.  1.  There  shall  be  established  within  the  in- 
stitute an  advisory  council  composed  of  thirteen  members  who  shall  be 
appointed  irr  the  following  manner:  two  shall  be  appointed  by  the  tem- 
porary presidenr  of  the  senate  and  one  b»  the  minority  leader  of  the 
senate:  two  shall  be  appointed  bv  the  speaker  of  the  assembly  and  one  by 
the  minority  leader  of  the  assembly;  seven  shall  be  appointed  by  the 
governor.  The  governor  shall  designate  the  chairman  of  the  advisory 
council.  The  members  of  the  council  shall  be  representative  of  the  pu- 
blic. educaciona-L  and  medical  insti.tutions,  local  health,  departments  and 


226 


A.  8197 

1  nonprofit  organizations,  including  organizations  providing  servicas  to 

2  high  risk  populations. 

3  Z.      The  advisory  council  shall  be  responsible  for  advising  the  commis- 

4  sioner  with  respect  to  the-  implementation  of  this  article  and  shall  make 

5  recommendations   ta  thfe  institute   for  the  purpose  of  carrying  out  the 

6  provisions  of  paragraphs  (e) .  (d)  and  (e)  of  subdivision  one  of  section 

7  twenty-seven  hundred  seventy-six  hereof. 

8  3.  The  council  shalX  meet  at  least  four  times  a*  year.  Special  meetings 

9  may  ba  called,  by  the-  chairman,  and  shall  be  called  by  him  at  the  request 

10  of  tha  commissioner. 

11  A-.   The  members  of  the  council  shall  receive  no  compensation  for  their 

12  services,  but  shall  be  allowed  their  actual  and  necessary  expenses  in- 

13  curred  in  the  performance  of  their  duties  hereunder. 

1^  §   2779.   Reports  by  the  commissioner-  That  commissioner  shall  orake  a 

15  Fxrsir  preliminary  report  tot  the  governor  and  the  legislature  of   its 

16  findings,   conclusions,   and   recommendationa   not   later   than  December 

17  first,  nineteen  hundred  eighty-three,  a  second  preliminary  report  of  its 

18  findings,   conclusions   and  recommendations  not  later  than  .March  first. 

19  nineteen  hundred  eighty-four  and  a  final  report  of  its  findin:;s.  conclu- 

20  sions   and   recommendations  not  later  chan  >:arch  first,  nineteen  hundred 

21  eighty-five,  and  shall  submit  with  its  reports  such   Legislative  prcoo- 

22  sals  as  it  deems  necessary  to  implement  ics  recommendations. 

23  §   2.   Such  chapter  of  the  laws  of  nineteen  hundred  eighty-three  is 

24  amended  by  adding  a  new  section  three  to  read  as  follows: 

25  §   3.    The   sum  of  four  million  five  hundred  thousand  dollars 

26  ($4.500 .000) ,  or  so  tnuch  thereof  as  may  be  necessary,  is   hereby   aporo- 

27  priated   to  the  department  of  health  from  any  nionevs  in  the  ttat  :  tre.as- 

28  ury  in  the  general  fund  to  the  credit  of  the  state  purposes  account   net 

29  otnen,rise   appropriated   for   the  purpose  or  entering  into  contracts  cor 

30  research  and  for  necessary  costs  of  administration  in  ralation  to  pin- 

31  graphs   (a)   and   (b)  of  subdivision  one  of  section  twentv-seven  hundred 

32  seventv-six  and  sections  twenf .'-sevcin  liur.dred  seventy-sqven  and   f.-entv- 

33  seven  hundred  seventy-eight  of  the  public  health  law,  as  added  by  sec- 

34  tion  two  of  this  act.  No  moneys  shall  be  available  for  e.xoenditure   for 

35  this   appropriation   until   a  certificate  of  aoncoval  has  been  issued  bv 

36  the  director  of  the  budget  and  a  cooy  of  such  certificate  or  any   amond- 

37  ment   thereto  has  been  filed  with  the  .state  comptroller,  the  chairman  of 

38  the  senate  finance  committee  and  the  chairman  of  the  assembly  ways   and 

39  means  committee. 

^0  §  3.  Section  fourteen  of  such  chapter  of  the  laws  of  nineteen  hxindred 

41  eighty-three  is  amended  to  read  as  follows: 

42  §   [14.]   4.   The  sum  of  [three]  si.x  hundred  [fifty]  thousand  dollars 

43  [(?350,000)]  ($600,000).  or  so  much  thereof  as  may  "be  necessary,   is 

44  hereby  appropriated  to  the-  department  of  health  out  of  any  moneys  in  the 

45  state  treasiiry  in  the  general  fund  to  the  credit  of  the  state  purposus 

46  account  and  Hot  otherwise  appropriated,  for  contracts  with  nonprofit 

47  community  organizations  for  programs  designed  to  alert  and  educate   the 
8  populations   at   risk,  and  the  general  public  about  the  nature  of  the  ac- 
quired immune  deficiency  syndrome  (AIDS)  crisis;  providing  patient  sup- 
port services  [including],  which  may  include,  but  need  not  be  limited  to, 

51  the  operation  of  a  hoc  line,   [maintenance  of  ].   crisis   laterventiott 

52  [units]  services,  home  attendant  [teams]  services,  legal  [aid  units]  as- 

53  sistance  and  ameliorative  and.  supportive  therapies. 

5^  §  4..   Section  twelve  of  such  chapter  of  the  laws  of  nineteen  hundred 

55  eighty-three  is  amended,  to  cead.  as.  faIlou&; 


49 
50 


227 


A.    8197 


L  §    [12)    5.  The  sum  of  one  hundred  fifty  thousand  dollars    (5150,000),   or 

2  so  much  thereof  as  may  be     necessary,      is     hereby     appropriated     to     the 

3  department     of     health  from  any  moneys   in  the  state  treasury  in  the  gen- 
^  eral  fund  to  tha  credit  of  tha.  state  purposes   account  not  otherwise     ap- 

5  propriated    ta  establish,,  ptomota  and  maintain  a.  public  information  pro- 

6  gram  regarding:  the  acquired  immune,  deficiency  syndrome     (AIDS)      for     the 

7  purpose  oil  providing  [educacional,.]   outreach,   health  and  counseling  ser- 

8  vices   for  the  general  public,  heaJ.th,    professionals,    and     targeted     higit 

9  risk  populations.  Na  moneys-  shall  be  available   for  expenditure  from  this 

10  appropriation  until  a  certificate  of  approval  has     been     issued     by     the 

11  director     of     the  budget   and_a  copy  of  such  certificate  or  any  amendment 

12  thereto-  has  been  filed  with  the  state  comptroller,    the  chairman     of     the 

13  senate  finance  committee  and   the  chairman  of  the   assembly  ways "and  means 

14  committee.  ^                      .„           ,     ^ 

15  »    S:.     SecEiott.  fifteeir  of  socfr  chapter-  ot  the  laws-  off  nineteen  hundretf 
IS  eighty-three    is    renumbered  section  six. 

17  §      6^     This      act   shall   take  effect   on   the  same  date   as    such  chapter  of 

18  the   laws   of  nineteen  himdred   eighty-three   takes   effect. 


228 


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229 


DATE   or   REPORT 


]nii 


Hooch  Diy 

STATUS   OF  THIS   REPORT 

LJ  New  case     [JUpdate  report 

I.      8ASIC    PATIEKT    IKPORMATIOH 

PATIEOT'S   RAME 


DEPARTMENT  OF  HEALTH  AND  HUMAN  SERVICES 
njaLic  MCALTH  scnvicc 

CCNTCMS  POn  Oftf  ASf  CONTMOL 
ATLANTA.  OCOKOI*  30333 

ACQUIRED  IMMUNE  DEFICIENCY  SYNDROME  (AIDS) 
CASE  REPORT 


CDC  CASE  REPORT  HUmE» 


n 


STATE/LOCAL  CASE 
REPORT    mjMBER 


DATE  OF   BIRTH 


ACE  AT  DIAGNOSIS  AIDS 


Month  Day  Tear  Teara 

RESIDEHCE   AT  OHSET  OF    ILLHESS   SUCCESTIVE  OF  AIDS 


— TTTk 

SEX 
□  Feaale 


Halden/Other 


aniTi 

RACE/ETHIIIC  ORIGIN 

lJUt<lce        □p(sIan7RcTTIc~TaIan3er 

Q  Black        rjAaerican   Indlan/Alaakan  Native 

la  patient  oiHlapanlc   (Latin  American) 
origin?        DTes        Q  •*> 


CTty 

CDIIHENT  CONDITION/ FROCHOSIS 
(_!  Outpatient /aabulatory 
Q  Hospl tallzed,    not    critical 
QHoapltalized.   critical 
QDead 


County 
ir  OCAO,   date  OF  DEATH 


State/iCountry)  Zip  Code 

ADTOtSY  fCTPORHED? 


D'"    n*" 


Day 


Year 


II.      specific   CONDITIONS  AND  OPPORTUNISTIC    INFECTIOUS  MOST   FREqUliWTLT   ASSOCIATED  MITH   AIDS 

Check   all    that   apply,    indicate   anatonlc    site    If    appropriate,    and   give   dace 
of  diagnoais  or  apeciaen  collection  and   the  (tost  specific  or  reliable  aethod  of  diagnosis  used 
(write   it)  code  number  from  Hat  at  bottom  of   page)* 


DATE  OF  SPECIMEN 
OR    DIAGNOSIS 


METHOD  OFt 
DIAGNOSIS 


Kaposi's    Sarcoma    (check   all   anatomical    aitea   that   apply) 
D  Lymph  Nodea  Q  Mouth/ ftiarynn  □  Skin 

Q  Anus/Rectum  Q  Internal    Organa*        Q  Other* 


ujcn  D 


♦specify  site 


D 
D 


BteuntocysClfl   carlnl  1    pneuaonla 


ToxoplaatBosli ,    encephalitis   or    brain   abacess 

Atypical    (non-tuberculous)   HycobscCerlal    Infection  (symptoiutlc 
dlsaeiBlnated,    e.g.    bone   narrow  or   iiultlple  organ    involvenenc) 
Q  M.    avluo-lntracellulare        Q  Other   species* 

•Specify   species 


nucD  n 
nncD  D 


a 

D 


D 
D 

O 


Candida   esophagltis    (Candida    Infectiona   at   others   sites 
nay  be   reported  on   ftge   2) 


Cryptosporldlosls   with   chronic   diarrhea  (persisting   >    1   month) 

Cytonegalovlrus    infection*   (synptooatlc  dlaseainsted, 

especially  with  docuaented  patholo^  of  lungs.   Intestine; 
exclude  oononucleosls  syndrove) 


♦specify  site(s) 


Cryptococcal    infection: 


t  Henlngltls 


Herpes  aloplex  Infection,   chronic  ulceration   (persisting  >l  aonth) 
Specify  sltefs)^ . 

Progressive  nultl focal    leukoencephalopathy 
(ftpovavirua   Infection,   brain) 


nn  a 


D 


CDC  USE 
City 

1 

County 

State 

1 

Sites 

Species 

1 

Sites 

1 

1 

Sites 

1 

t METHODS  OF  DIAGNOSIS :   (Not  all  aechods  are  appropriate  or  acceptable  for  all  diseases) 

1  •  Microscopy:  cytology,  histology    4  -  Serology:  Antibody  titer,  any  technique  7   ■  X-ray,  fluoroscopy, etc. 

2  •  Culture/nlcroblologlc  techniques   3  ■  Antigen  detection,  any  technique        8  •  Ultrasound*  CAT  scan, etc. 

3  "  Endoscopy:  bronchoscopy,  6  -  Physical  exaainatlon  9  ■  Unknown 

slgaoldoscopy,  etc. 


230 


OTH£R  OPPORTUNISTIC    INFECTIONS  AMD  CANCERS,    soae   ol   which  are    listed   below,    uy    be   aaaoctated   with   AIDS.      In   the 
following   spaces,    Uac    these  or  other   diseases    the   patient    has   had,    the   site   of   occurrence,    the   date  of   diagnosis  or 
speclaen  collection,    and    the   aost   specific   or    reliable  method   of   diagnosis   used    (use   code   nuaber    froa   list   below>. 


o  TuberculoBls,  especially  severe  or  dlsaeninated   (e.g..   Involving  liver,   marrow) 

o   Nocardla   Infection   (Nocardiosis) 

o   Coccidloldes    Infection    (Coccldloldonycoalfl) 

o   Lynphoma   or   retlculua   cell    sarcoma    Involving   the   brain   only 

o   Burkltt's   lynphona 

o   Diffuse,   pleomorphic,   undifferentiated,   non-Hodgkln*a   lyaphoaa 


PATHOCEN/ DISEASE 


AfmOWIC   SITE 


DATE  OF   SPECIMEN 
OB   DUCNOSIS 


METHOD  opt 
DIAGNOSIS 


LULU    D 


on 


n 


_  nmin  d 


fNot  all  aetbodB  mre   •ppfoprljite  or  •cecptable  for  *11  dl««i»««) 

cytoloRr.  histology     4  -  Scrolony:  Antibody  titer  7  •  X-r«T,  f luorotcopy,  ■ 

2  -  Culture/mlrroblolodlc  terhnlque*    5  -  Antigen  detection,  •ny  technique  8  •  Ultr»«ound.  CAT  scan 

3  -  Endoacopy:  br  on  c  Kob  c  opy  .  *■  "  Biyilc«i  *«««tn«tlon  9  •  Uihnown 


tHETHODS  OF  DIAGNOSIS: 
I  -  Hlcr< 


oldnai 


ipy  . 


in.       INFECTIONS/CONDITIONS  OCCURRING  WITH   Bin"   NOT   SPECIFIC   FOR  AIDS   OR  AIDS    PRODROME 


Check   all    that    have   occurred: 

QAsebiasls,    persistent 

□  Herpes    alnplex,    chronic   or    persistent    vesicular    Infection 

□Mouth/ Ftiarynx  CDGenltal  OAnal/Rectal 

□  Herpes  zoster 

□Localised  □Disseminated 

□  Candida    Infection 

□  Colo/Rectal  □oral/rtiaryngeal    (thruah) 

□  Idlopathlc/Autolmnune    throabocytopenlc    purpura 

□  Aucolnnune   heoolytlc    anenla 

□  Nephrotic   syndrome 

□  other    (Specify) . 


□  ^tone 


□other 


□unknown 


IV.      SIGNS/SWPrOHS    PRODROMAL  TO  AIDS 

Check   all    Blj^ns/syoptome    persistent   at    least    one  month   before 

onset   of  a   specific   infectlon/diaease  suggestive  of   AIDS. 

□  Fever 

□  Night   sweats 
QMalalse/Fatlgue 

□  chronic   lyaphadenopathy ,   >   3  non-contiguous  sites 

□  Arthralgias /Myalgias 

□  Weight    loss,   unexpected,   >    15  pounds  or   >    lOZ  normal    body  weight 

□  chronic  diarrhea 

□  no  pathogen/cauae   Identified 

□specific  pathogen/cauae   Identified   (Specify) 

□  persistent    bone   marrow  dysfunction 

□  Leukopenia    (<4300/m»3)  □Lymphopenia   (<1500/om5) 
□Thrombocytopenia   (<IO0.0OO/™3) 


□  ^tone 


□ikiknown 


Pathogen/      Anatomic 
Disease  Site 

IZJ  ED 


ED  n. 


CD 


Approximate   Date  Oiset 
First    Slgn/Sympton 


□  other   (Specify) 


V.      DISEASES   OR   CONDITIONS    FRECEDIHC  OR  COEXISTING  WITH   DIAGNOSIS   OF  AIDS 
Check  sU    that   have  occurred:  nNone 

□  Leukemia 

□  Acute   lymphocytic  Ochronic   lymphocytic  □  Non-1  ymphocytlc 

□  hodgkln's   disease 

□  Non-Hodgkln'a    lymphoma 

□  Multiple  myeloma 

S Diabetes  melUtia.    Inaulin-dcpendenC 
Renal   failure,   chronic 

□  Hepa  c 1 1  i  a ,    chron 1 c 

□  congenital  looune  deficiency  syndrome  (specify) 

□  Bleeding  disorder/Clotting  factor  deficiency 


□  Unknown 


CD 


a  Factor   Vtll  deficiency   (cla.alcal   Heaophllla) 
Factor    IX  deficiency 
Qother   requiring  factor  replaceaent   therapy   (ap»clfy)_ 

Oother   (apeclfy)^ 

CDC  59.3  f**^  2 

nCV.  4-83 


CD 

en 

CD 


231 


VI.      MEDICAL   IMMUNOSUPntESSIVE   THERAPY  QNone  CJlMknown 

During    3  nonths    preceding  diagnosis   of    AIDS,    did   patient    receive    (check   all    that   apply): 

Qsystealc   cortlcoiiteroida  [jCytotoxlc   cheaotherapy /other    lataunosuppresslve    therapy 

If  ye*.,   did    synptoas   of   specific    Infectloua   disease   precede    It^unosuppressl ve   therapy?         Qves         [.jNo 

YII,      SOCIAL  AND  RISK  FACTORS   (Check  all    that    apply) 

Usual    occupatlon(s )   of    patient   during   last    5  years 


Marital    Status:      □  Never   narrled        QMarrled         Qwidowed         nS«P«rated         Doivorced         Ounknovn 

Living  srrangenent    of    patient   during   year    preceding  diagnosis   of   AIDS: 

[^ Alone        n^'ith  spouse        [~)with  children        ]~3with  aale  coBpanlon(s)        Qwith  fenale  cofflpanlon(8) 

Month  Tear 

Uaa  patient   born  in   U.S.    (50  states)?      ClYes      □*        If  no.   date  of  arrival   In   U.S.    1       I       II       i       I 

If   patient   or   either   parent   were   bom   outside   U.S.,   what  was   country/territory  of   blrth/orlgln? 
QCanada         □C"'>*         □Dominican   Republic         [jHaltJ         QHcxIco  Qftierto   Rico 

Qcanbodla/Vletnaa/Laos         [jOther    (specify  country/terrttofy)  


Has    the   patient    ever   used   needles    for   sel  f-lnjectlon  of   non-prescrlptlon   drugs?      Qtes       [J'**       ffUnknown 

What    Is    the   sexual    orientation   of    this   patient? 

QHeterosexual         QHoowsexusl  Qfllsexual         [_jNone         [    ]  Unknown 

Was    the   patient    pregnant   while    til    with   AIDS?         LJYes         LJno         LJunknown  LjNever    Pregnant 

Has    the    patient   delivered   a    live-born    Infant    during    the    last    5   years?         LJYee       Qno  QLViknown 


CDC   USE 

1 

During  the   five  years  preceding  diagnosis  of  possible  AIDS,   did   this  patient : 

Yes      No      Unknown 


0   Have    sexual    relations   with  a  LJ  [_]         I ! 

aale   partner    ?  _.  _.  — — 

o    Have   sexual    relations   with  a  1 I  LJ  1— J 

feaale  partner? 

o   Have   sexual    relations   with  a  LJ  LJ  LJ 

person   who   now   has   AIDS? 

o   Have   close,    non-sexusl    contact  PH  PH  LJ 

with  a    person   who   now  has   AIDS?  _^  ^_^  — — 

o   Receive   hepatitis    B   vaccine?  LJ  I I  LJ 

o   Receive    hepatitis    B   loaune  n  PI  n 

globulin  fHBio?  rn  rn  rn 

o  Receive  other  lirmune  globulins?  LJ  LJ    I I 

o  Undergo  heoodlalysls?  LJ  LJ  LJ 


o  Been  In  jail  or  served  a 

prison  tera? 
o  Receive  Factor  Vlll 

concentrate? 
o  Receive  cryopreclpltate? 

o  Receive  factor  IX  concentrate? 

o  Receive  blood  or  pecked  red 

cell  transfusion? 
o  Receive  other  blood  conponents, 

e.g.,  platelets,  plasoa,  etc? 
o  Donate  blood? 

o  Donate  plasma? 


Yes   No   Unknown 

Dan 
D  n  D 
D  D  n 
a  D    D 

ODD 

ODD 
D  D     D 

D  D   n 


If    patient    has   donated    blood   or    plasm,    what    Is    the   name   and 
address  of  the   last  or  Boat    frequently  used  donation  center? 


ApproxlBiate   date   of    last   donation 


Nane   of    blood/plasma   center 


City 


State 


Honth 


Day 


Year 


VITT.      LABORATORY   DATA:      Reault-s   before   use   of    Immjnoauppresslve    therapy    (cytotoxic   drugs,    steroids)    preferred. 
WHITE   BLOOD  CELL  COUKT  PERCENTACE   LYNPHOClfTES  PLATELET  COUNT   (Lowest   value)  Date  of    Laboratory   Tests 


Honth 


Day 


Year 


T-LYMF«OCrrE  SUBSET  COUNTS:  Dcheck  If   T-<:eIl    studies  not   perfomed 

Qoeck   If  patient   received  eterolds/other   laaBunoauppreaslve   therapy  during  aonch  before  T-cell   studies 


^rentage  of   Lymphocytes 

T-HELreR  I p— j 

(OICT-4,    >u-3)  I        I        I  I 


T-HELPER/T-SUPPRESSOR 
(T„/Ts)  RATIO 


Percentage   of    Lynphocytes  Date  of    T-Lynphocyte   Tests 


Honth 


Day 


Year 


Interpretation  of    Th/Tj                                           _,                  —^ 
ratio  for   this  patient   Is:        [ |Nornal        I (High        | |  Low 


Range  of  norsal   valuea   for  T^/Ts   ratio  at   this   laboratory:      HI 


gh  norsal   I       L      I  low  noraal   I       L      I 


COC  59.3 
BCV.  4.B3 


232 


ADDITIONAL  INFORMATION  OR  COMMENTS: 


or  treataent  of  disease  associated  with  AIDS  or  cellular  Imnune  deficiency  conditions? 
nospl tal 


D 


HOSPITALIZED 


City 


MEDICAL  RECORD  NUMBER 


ADHISSION  DATE 


1 1 1 1 1 1 1 1 1     g:;]  qp  qn 

Month  Dsy  Year 


1«.    Name  of   person 

conplettng  this  fom 


Tltle/Rjslt  ion/Special  ty_ 
Instl cutlon/Address 


2.      Person  reporting  this  case 
(If  different   froa  above) 


Title/ItosltIon/Speclalty_ 
Instl tution/Addreas 


Telephone  ( ) 


Telephone  ( ) 


niyalcian  to  contact  to  update  Infornatlon  about  this  patient  (If  different  froa  above): 

3.   Nane:       Telephone  ( ) 


Tltle/R>8ltlon/Speclalt)r_ 
Instl tutlon/Address 


Other  physicians  who  may  provide  Important  Inforoatlon  about  this  patient: 

4.   Nsne: Telephone  ( ) 


Tltle/R>sltion/Specislty_ 
Instl tutlon/Address 


Ext 


Telephone  ( ) 


Title/n>sitlon/Speclalty_ 
Institution/Address 


FOR  CDC  USE 


Place  of  diagnosis  resulting   In   Initial   case   report: 


Hospital 
Pora  reviewer  Date  of   forv  review 

CD       Cn  CD  [XI 

Month  Day  Year 


City 
Case  Classlficatloa 

DD 


State 

Date  of  keypunch/ 
cooputer  entry 


COC  59.3 
REV.  4.a3 


233 

MEW  YORK  STATE  AIDS  TASK  FORCE 
INITIAL  REPORT  TO  THE  GOVERNOR 

•  f* 

JUNE  21,  1983 


Submitted  by: 

David  Axel  rod,  M.D. 

Comm'ssioner  of  Health 

AIDS  Task  Force  Chairman 


234 


CONTENTS 

1.  AIDS:  State  Concerns  4  Responsibiliffes 

2.  Current  Information  About  AIDS 

3.  Specific  Task  Force  Agency  Concerns  and  Recommendations 

—  Department  of  Health 

—  Department  of  Correctional  Services 

—  Commission  of  Correction 

—  Department  of  Insurance 

—  Division  of  Substance  Abuse  Services 

—  Office  of  Mental  Health 


235 


AIDS:  State  Concerns  and  Responsibilities 


The  phenomenon  of  AIDS  now  looms  as  a  major  public  health  issue  for 

government  and  science  —  because  of  the  puzzle  that  it  represents  for 

researchers,  the  peril  with  which  it  threatens  certain  people,  and  the  anxiety 
it  generates  in  the  populace. 

There  are  many  questions  which  still  lack  answers.  We  know  that  AIDS 
primarily  attacks  intravenous  drug  users  and  homosexual  males.  But  we  don't 
know  why.  We  don't  even  know  if  the  syndrome  represents  a  single  disease 
entity. 

This  report  emphasizes  the  urgent  need  for  answers  to  address  the 
concerns  of  designated  "high  risk"  groups,  service  workers  who  care  for  AIDS 
victims  or  potential  victims,  and  society  at  large  before  fear  overcomes 
reason. 

While  AIDS  may  not  compare  to  heart  disease  or  auto  accidents  as  a 
killer,  it  does  represent  a  major  and  immediate  challenge.  The 
recommendations  for  action  included  in  this  report  fall  into  four  major 
categories  of  government  responsibility: 

1.  Civil  Rights.  There  is  a  pressing  need  to  act  firmly  and 
directly  to  protect  the  civil  rights  of  persons  v/ho  are   caught  up  in  the  AIDS 
fear  that  is  spreading  more  quickly  than  the  disease  itself.  Whole  groups  in 
our  society  are  in  danger  of  being  needlessly  ostracized  and  isolated. 
Haitians  are  being  fired  from  their  jobs  for  no  reason  other  than  their 
national  origin,  doctors  are  reluctant  to  treat  patients,  funeral  directors 
are  calling  for  a  moratorium  on  full  services  for  AIDS  victims,  and  some 
voices  in  the  popular  press  are  suggesting  that  "God's  revenge"  is  being 
visited  upon  certain  members  of  our  society.  All  state  agencies,  departments, 
boards,  commissions  and  officers  must  avoid  any  prejudicial  activity  toward 
AIDS  victims,  their  families,  or  the  widely  labeled  "risk"  groups. 
Furthermore,  every  available  tool  should  be  used  to  prevent  such 
discrimination  by  others,  primarily  in  the  service  industries. 

2.  Education.   Ignorance,  fear  and  misinformation  are  threatening  to 
overtake  science  and  reason.  This  is  partly  due  to  an  apparent  opportunism  on 
the  part  of  some  scientists,  and  the  natural  impact  of  heightened  publicity. 
There  is  no  credible  scientific  evidence,  for  instance,  that  what  we  connonly 
call  AIDS  is  actually  a  communicable  disease.  Yet  it  is  frequently  being 
defined  as  an  infectious  or  communicable  disease,  resulting  in  escalating 
fears  about  AIDS  spreading  through  casual  contact,  on  dinner  plates,  in 
prisons,  on  bed  sheets,'  on  public  transportation,  and  through  blood 
transfusions. 

To  allay  public  fears,  to  stop  the  increasing  isolation  of 
persons  identified  as  members  of  risk  groups,  and  to  disseminate  accurate 
information  on  this  issue,  we  must  expand  and  accelerate  our  current  education 
efforts.  Just  as  we  have  worked  with  the  Corrections  Department  to  address 
the  concerns  of  employees  and  inmates,  we  must  provide  relevant  factual 
information  to  other  occupational  groups,  such  as  doctors,  hospital  v/orkers. 


236 


sanitation  men,  laundry  workers,  drug  counselors  and  others.  People  need  to 
understand  that  the  only  known  routes  of  transmission  are  through  homosexual 
activity  and  IV  drug  use,  and  that  the  risks  outside  those  activities  are  not 
significant.  We  believe  blood  transfusions  do  not  present  a  risk,  but  the 
public  at  large  needs  to  learn  and  understand  that  fact,  and  many  others. 

3.  Treatment.  The  tragic  victims  of  this  disease  are  nainly  young, 
largely  male,  and  commonly  suffer  from  months  or  even  years  of  anxiety  as  they 
v/ait  for  an  opportunistic  infection  to  attack  their  defenseless  bodies. 
Because  of  fear  and  prejudicial  treatment,  they  may  also  suffer  from 
isolation,  loneliness,  loss  of  job  and  income,  as  well  as  the  disease  itself. 
It  is  more  difficult  to  protect  such  persons  from  the  infections  that  threaten 
them  when  society's  normal  network  of  support  services  desert  them.  We  also 
have  a  significant  number  of  AIDS  victims  in  our  state  institutions,  and  they 
need  special  consideration. 

Therefore,  the  state  must  inake  a  major  effort  to  provide 
appropriate  treatment  facilities  for  all  institutionalized  AIDS  victims,  to 
care  for  them  in  a  comforting  setting  that  protects  them  as  much  as  possible  . 
from  infection.  And  we  must  also  use  what  authority  and  persuasive  powers  we 
have  to  assure  that  non-institutionalized  AIDS  patients  are  provided  the  care 
they  need  —  the  care  v/e  v;ould  expect  to  be" made  available  to  any  victim  of  a 
debilitating  disease  in  our  society.  Furthermore,  the  state  should  continue 
to  support,  and  expand,  counseling  programs  for  victims  and  potential  victims 
and  their  famil ies. 

4.  Research.  V/ith  so  much  of  what  is  now  known  about  AIDS  based  on 
incomplete  research  reports,  thumbnail  sketches  and  inadequate  data,  there  is 
a  large  gap  in  the  scientific  as  well  as  popular  understanding. 
Epidemiological  questions  about  localized  clusters  of  the  disease,  about  drug 
use  habits,  about  certain  sexual  practices,  about  the  significance  of  the 
"risk  groups"  and  the  infections  which  strike  them,  all  need  investigation. 

As  New  York  State  is  the  unhappy  host  to  roughly  half  the  known  cases,  we  have 
an  ideal  opportunity  and  a  responsibility  to  pursue  this  research. 

A  whole  range  of  clinical  issues  also  needs  to  be  investigated. 
Research  on  the  immune  system,  which  is  already  going  on  in  connection  with 
other  diseases,  must  be  expanded  to  focus  on  AIDS  directly.  The  two  main 
types  of  infections  striking  AIDS  Patients  may  have  some  relationship  to 
different  strains  of  AIDS,  different  ratios  of  iimune  system  actors  in  our 
bodies.  The  questions  are  numberless. 

The  risk  to  the  general  population  appears  now  to  be  virtually  nil, 
for  the  percentage  of  cases  outside  the  basic  risk  groups  is  remaining 
constant  at  approximately  5%,   even  as  the  caseload  mounts.  But  that  is  small 
comfort  to  those  unfortunate  people  who  live  with  the  knowledge  that  they  are 
susceptible.  We  have  a  grave  responsibility,  as  the  home  of  half  the  known 
victims.  But  we  also  have  the  opportunity,  as  you  said  on  June  17,  "...to  set 
an  example  for  the  nation..."  in  attacking  AIDS.  Without  hysteria,  but  with 
reason;  without  anger,  but  with  compa;ssion;  without  fear,  but  with  honesty  — 
we  can  serve  well  all  the  people  of  Mew  York. 


237 


Current  Information  About  AIDS 


nnn  inSorJ^L*-^  ""*  two  years,  a  significantly  increasing  incidence  of 
non-inherited  immune  suppression  has  appeared  in  the  United  "Jt^tpe  anH  <-^  c«™- 
extent  in  other  countries.     While  the  I'a'bel  Acquired  Ke  Defici-ency 
Syndrome  (AIDS)  has  been  given  to  these  cases,   there  is  no  defnitive  evidence 

of  etio'loov  ""Tch'I'AVI"'''  V'^l'  '.'V^''  "''^^  '  common  caJstfvr  gent 
hL!  I^;^'       *  *u°^  the  current  epidemiological  and  medical  data,   in  fa!t 
does,  not  support  the  single  disease  concept.  ' 


Medical  data 


a^  thP  oi  been  defined  by  the  federal  Centers  for  Disease  Control   (CDC) 

nPrJJnc  u^^r'"'!  °^  specific,  rare  opportunistic  infections  or  cancer    n 
persons  w  th  no  known  cause  for  diminished  resistance  to  these  diseases      Such 
diseases  include  Kaposi's  Sarcoma   (a  previously  rare  cancer)-  Pneumocvstis 
carinii  pneumonia  (previously  seen  only  in  the  very  elder?y  or  amZ  Jit  ents 
trt2V.ni  f  ^"^°t^^'-,^Py  °^.   ^unosuppressive  therajy  associa?ed  w?fh  organ 
transplants);   or  such  serious  opportunistic  infections  as  central   nerSoSs 

d^     rheaf??  n^«'^.''  ^'/'r'^'^l^^^'^  candidiasis,  cryptococcal  meni-ngUis.  a 
diarrheal   illness  caused  by  Cryptosporidium  and  nontuberculosis 
cwn?i!n  ?'"'°u'^     Unexplained  combinations  of  prolonged  fever,  weight  loss  and 
SnJromel^""'     ^  ""^  represent  early  foms  or  a  mild  variant  i?  the 

Laborator7  tests  of  AIDS  victims  indicate  a  significant  reduction  in  the 
numbers  of  T  helper  lymphocytes   (white  blood  corpuscles  in  the  lymph  Jl aids) 
n     Lnf'  r^'l'^y  responsible  for  cellular  immunity.     Lymphocytes  of  AiSs 
.^nt  n^n     f/°    -^"^  Srossly  depressed  proliferation  response  to  mitogens  and 
antigens  (foreign  matter)   in  the  blood  stream.  "■' uuyens  ana 

n=^,-.  l^  ^^  noteworthy  that  the  opportunistic  diseases  which  affect  AIDS 

b  sS  L7es°L'nd%'o'r'\'^''  1°  the  various  "risk"  groups.     Homosexual   and 

!lnff^!l  .■         }l  .  t°  <^e^^1°P  Kaposi's  Sarcoma  as  the  initial  disease 

H^vlin     I       "'       *^'"'3  "'^'"  ^^"ctims.  Haitians  and  hemophiliacs  most  frequently 

develop  Pneumocystis  carinii  pneumonia  as  the  most  virulent  and  fatal   ^"^"'^'^ 

both'cSSditiSns     ''^'°"'     '^  ^'^  '''^''"^'  (approximately  10%)  have  developed 

rnr  JJ"!  ""k^  of  AIDS  is  still   unknown,   although  research  is  in  progress  at 
CDC  and  a  number  of  medical   centers  across  the  U.S.     Although  all  evidence 
indicates  that  the  syndrome  is  not  communicable  through  casual  contact    it 
does  appear  in  persons  who  have  intimate  sexual  contact  or  who  have 
rp^!r;!.^h"     repeated  intravenous  injections.     This  phenomenon  has  led  some 
^!^n^    r\^°  ^P^-^^l^te  that  the  causative  agent  for  AIDS  may  be  a  virSs 
norJjen\°sSl?;h':d\'-     '''''''  "  ''"^"^^'""^  ^Sent  is  actually  involved  has 


26-097    O— 83 16 


238 


Since  the  disease  tends  to  affect  specific  groups  and  has  not  spread 
beyond  these  groups,  some  physical  or  environmental  factor  or  factors  common 
to  the  host  (or  victim)  may  be  contributory  or  causatory  to  development  of  the 
syndrome.  One  hypothesis  is  that  the  immune  system  of  AIDS  victims  may 
already  be  damaged  or  compromised  in  some  way,  thereby  increasing  certain 
Individuals'  susceptability  to  the  condition.  We  know,  for  example,  that 
certain  infections,  including  hepatitis  B,  are  more  common  among  IV  drug  users 
and  active  homosexuals  than  among  the  general  population.  A  number  of  AIDS 
victims  also  had  a  previous  history  of  sexually  transmitted  disease  (including 
herpes,  gonorrhea,  etc.)  and  laboratory  tests  have  confirmed  antibodies  in  the 
blooci  for  hepatitis  B  and  cytomegolovirus  (CMV)  among  many  of  these  victims. 

Epidemiologic  data 

The  national  case  summary  issued  by  the  Centers  for  Disease  Control 
reports  that  nearly  95%  of  AIDS  victims  have  been  male,  with  more  than  90% 
between  the  ages  of  20  and  49.  Based  presumably  on  case  histories  provided  by 
the  victims,  CDC  has  allocated  approximately  71%   of  AIDS  cases  to  the 
homosexual  or  bisexual  "risk"  category,  and  17%  to  the  intravenous  (IV)  drug 
use  "risk"  group.  Approximately  5%  of  national  AIDS  cases  have  been  reported 
among  Haitian  immigrants.  A  few  persons  with  hemophilia,  who  are  receiving 
pooled  factor  VIII  concentrate  therapy,  have  been  diagnosed  as  having  AIDS.  A 
small  number  of  cases  nationally  which  currently  do  not  appear  to  fall  within 
these  four  risk  categories  are  under  investigation  by  CDC  and  local  health 
agencies. 

AIDS  cases  presently  are  clustered  in  certain  geographic  areas,  with  80% 
of  cases  concentrated  in  six  metropolitan  areas,  primarily  in  New  York  and 
California.  Approximately  50%  of  all  AIDS  cases  have  been  reported  from  l.'ew 
York  State.  Nearly  90%  of  IV  drug  associated  cases  have  been  identified  in 
the  northeastern  U.S.,  primarily  New  York  and  New  Jersey. 

National  incidence 

Through  Kay  18,  1983,1,450  AIDS  cases  were  confirmed  nationally  by  CDC. 
Of  these  558  had  died,  for  a  case  fatality  rate  of  39%. 

Of  the  1,450  confirmed  cases,  26%  presented  with  Kaposi's  Sarcoma  (KS), 
51%  with  Pneumocystis  carinii  pneumonia  (PCP),  8%  with  both  KS  and  PCP,  and 
15%  with  other  opportunistic  infections  (01)  without  KS  or  PCP. 

Cases  occurred  in  whites  (57%),  blacks  (28%),  and  Hispanics  (14%). 
Major  risk  groups  include  homosexuals  or  bisexuals  (71%),  IV  drug  users  (17%) 
and  Haitians  (5%).  Eighteen  AIDS  cases  have  been  reported  in  hemophiliacs: 
14  in  the  United  States,  4  from  overseas.  CDC  is  also  investigating  18 
possible  transfusion  related  cases. 


239 


New  York  State  -Incidence 

Through  May  18,  1983.  700  or  18%   of  the  total  United  States  CDC  reported 
AIDS  cases  were  in  New  York  State  residents:  660  or  45S  from  New  York  City 
and  40  or  3S  from  Upstate  New  York. 

The  epidemiologic  features  of  New  York  State  AIDS  cases  are  determined 
from  a  statewide  case  registry  in  the  Health  Department  which  is  updated  on  a 
monthly  basis.  Features  of  New  York  State  AIDS  cases  are  similar  to  United 
States  cases  in  terms  of: 

%  Male  93J  941 

%  Black  295  28« 

%  homosexual/bisexual  '    73S  71% 

%   aged  20-49  92%  912 

but  differ  in: 

■%   White  50%         57S 

%   Hispanic  21%  14S 

%  with  IV  drug  use        33%  M% 

Of  the  40  upstate  New  York  AIDS  cases  reported  by  CDC  as  of  May  18, 
1983,  21  occurred  among  inmates  in  State  prisons.  As  of  June  7,  1983,  the 
State  Health  Department  has  reports  of  36  confirmed  AIDS  cases  among  State 
prison  inmates  with  7  other  possible  cases  under  review.  All  evidence 
indicates  that  these  inmates  contracted  AIDS  prior  to  imprisonment.  The 
syndrome  is  now  thought  to  have  an  incubation  period  of  up  to  two  years  and 
virtually  all  inmates  with  confirmed  AIDS  had  a  prior  history  of  IV  drug  use 
in  the  tiew  York  City  area  prior  to  incarceration.  New  Jersey  inmates  with 
AIDS  also  have  a  history  of  drug  use  in  New  York  City.  New  Jersey  is  the  only 
other  state  reporting  AIDS  prison  cases. 

If  the  prison  inmate  cases  are  removed  from  the  upstate  case  total,  as 
appears  more  appropriate,  it  is  evident  that  AIDS  is  not  a  major  disease 
entity  in  New  York  outside  of  New  York  City. 

Risk  to  the  General  Population 

At  the  present  time  there  is  no  evidence  that  AIDS  represents  a  risk  to 
the  general  population.  As  indicated  by  the  national  case  data,  only  S%   of 
reported  cases  currently  appear  to  fall  outside  of  the  identified  "risk" 
categories.  That  percentage  has  held  steady  even  as  overall  case  reports 
climb. 


240 


no.  cases 

%   of  total 

homosexual,  bisexual 

1031 

71.0 

IV  drug  use 

248 

17.0 

Haitian 

75 

6.0 

hemophiliac 

.  12 

0.8 

*■  no  apparent  risk  group 

83 

5.2 

I 


*  These  cases  are  still  under  study  by  CDC  and  state  and  local  health 
personnel  in  an  effort  to  discern  potential  risk  factors.  Some  cases, 
initially  reported  "outside  of  the  risk  groups"  have  proven,  upon  further 
investigation,  to  fall  within  one  of  the  risk  categories. 

It  is  noteworthy  that  not  a  single  case  of  AIDS  has  been  reported  among 
/-health  personnel,  laboratory  personnel  or  funeral  directors.  While  some 
infection  control  precautions  are  now  generally  taken  with  AIDS  patients' 
blood  samples  and  body  fluids,  there  v/as  an  approximate  tv/o  year  period  before 
the  syndrome  v/as  identified  when  AIDS  patients'  and  laboratory  specimens  were 
handled  in  a  routine  manner. 

Secondary  cases,  involving  potential  non-sexual  transmission  to 
household  members  or  close  companions  of  AIDS  victims,  have  not  been  reported. 

Based  on  all  epidemiologic  data  to  date,  there  is  no  evidence  that  AIDS 
Is  transmitted  through  casual  contact,  including: 

—  sneezing,  coughing  or  spitting 

—  handshakes  or  other  non-sexual  physical  contact 

—  toilet  seats,  bathtubs  or  showers 

—  utensils,  dishes  or  linens  used  by  an  infected  person 
•  —  food  prepared  or  served  by  an  infected  person 

—  articles  handled  or  worn  by  an  infected  person 

—  being  around  an  infected  person,  even  on  a  daily  basis  over  a 
long  period  of  time. 

Blood  Transfusion  Risk 


Following  intensive  evaluation  of  all  data  by  a  special  AIDS  task  force 
appointed  in  1983,  the  New  York  State  Council  on  Human  Blood  and  Transfusion 
Services  concluded  that  the  risk  of  developing  AIDS  from  blood  transfusions  is 
remote  and  that  adequate  precautions  to  safeguard  the  blood  supply  to  the 
maximum  extent  possible  are  being  taken. 

The  following  resolution  was  passed  unanimously  by  the  Council  on  June 
8,  1983: 

"Analysis  of  all  the  data  collected  to  date  has  demonstrated  no 
significant  risk  for  recipients  of  blood  or  blood  products  for 
contracting  the  acquired  immune  deficiency  syndrome  (AIDS).  Until 
further  data  now  being  accumulated  can  be  evaluated,  the  added 
precaution  being  taken  as  a  standard  public  health  measure,  is  the 
voluntary  exclusion  of  donors  v/ho  are  at  high  risk  for  exposure  to 
AIDS.  Evaluation  of  the  laboratory  tests  currently  available  has 
failed  to  demonstrate  that  any  one  test  or  combination  thereof  has 
proven  to  be  more  effective  than  those  measures  already  in  place." 


241 


More  than  12  minion  units  of  blood  and  blood  components  are 
administered  to  about  3  million  people  each  year.  There  also  are 
approximately  15,000  hemophiliacs  in  the  U.S.,  each  of  whom  has  received 
frequent  transfusions  of  pooled  factor  VIII,  a  blood  clotting  component  which 
requires  several  thousand  donors  for  each  transfusion. 

There  have  been  14  cases  of  AIDS  reported  among  hemophiliacs  in  the  U.S. 
and  fewer  than  10  additional  cases  which  are  currently  under  investigation  for 
a  possible  link  to  blood  transfusions.  In  only  one  case  (a  California  infant 
with  a  platelet  deficiency)  was  CDC  able  to  identify  an  AIDS  victim  as  a 
donor.  The  remainder  of  the  blood  acquired  from  this  donor  was  administered 
to  other  recipients  v/ho  did  not  develop  AIDS.  In  addition,  it  is  impossible 
to  rule  out  congenital  immune  deficiency  or  immune  system  defects  in  the  case 
of  an  infant. 

Risk  Groups 

The  reason  for  AIDS  incidence  among  specific  groups  is  not  known. 
Outlined  below  is  the  known  information  potentially  relevant  to  AIDS  case 
identification  among  the  various  "risk"  groups. 

Drug  Users:  Virtually  all  AIDS  victims  who  report  intravenous  drug  use 
are  from  the  northeastern  U.S.,  primarily  Hew  York  City.  There  is  very  little 
incidence  of  AIDS  among  lY  drug  users  on  the  West  Coast.  It  is  presumed  at 
this  time,  that  AIDS  case  finding  among  IV  drug  users  is  related  to  sharing  or 
re-using  dirty  needles,  since  Hepatitis  B  can  be  transmitted  from 
person-to-person  through  this  route.  It  is  of  note,  that  the  Office  of  Drug 
Abuse  reports  that  there  are  known  "shooting  galleries"  in  the  New  York  City 
area  where  drug  injection  paraphernalia  may  be  rented  and  that  such  equipment 
is  not  discarded  or  disinfected  after  each  use. 

One  research  group  has  published  a  study  indicating  that  children  born 
to  IV  drug  user  AIDS  victims  may  have  contracted  the  syndrome.  .  The 
researchers  acknowledge  that  the  diagnosis  of  AIDS  in  these  children  is  not 
confirmed,  and  that  congenital  immune  defects  and  deficiencies  are  sometimes 
present  in  young  children.  All  children  involved  in  this  study  developed 
symptoms  of  immune  deficiency  within  the  first  two  years  of  life,  generally 
within  the  first  year.  This  may  indicate  that  the  condition  was  congenital  or 
that  AIDS  may  be  acquired  simultaneously  by  the  mother  and  child  across  the 
placenta  during  gestation  or  through  blood  comingling  at  the  time  of  birth. 

Homosexual  &  bi-sexual  men:  Nearly  75  percent  of  AIDS  cases  occur  in  young 
men  (ages  20-40)  who  acknowledge  homosexual  or  bi-sexual  activity.  These 
cases  are  clustered  in  big  cities  (New  York,  San  Francisco,  Miami,  Los 
Angeles)  where  large  gay  communities  exist  and  sexual  contact  among  strangers 
is  readily  available.  A  large  percentage  of  the  homosexual  and  bi-sexual  AIDS 
victims  report  multiple  sexual  contact  in  "gay  bath  houses"  or  other  "gay  pick 
up"  type  facilities  or  clubs. 


242 


One  CDC  researcher  in  California  was  able  to  link  40  homosexual  AIDS 
patients  as  having  had  sexual  exposure  to  at  least  one  other  case.  Of  the  27 
cases  for  which  detailed  information  was  available,  81. 5S  of  the  men  were 
reported  to  have  engaged  in  a  sexual  practice  involving  rectal  trauma  during 
the  year  before  they  fell  ill.  The  practice,  called  "fisting"  involves  the 
insertion  of  a  portion  of  the  hand,  or  even  the  entire  fist  into  the  anus  of 
another  person.  The  males  in  this  study  also  appeared  to  be  very  sexually 
active.  The  27  men  had  a  median  of  120  sexual  partners  (50  percent  of  whom 
were  strangers)  during  the  year  before  the  onset  of  symptoms.  One  individual 
reported  up  to  250  sexual  partners  in  each  of  the  three  years  prior  to  symptom 
onse,t. 

The  possibility  of  AIDS  transmission  through  rectal  trauma  (fisting  or 
anal  intercourse)  is  under  study  as  a  potential  risk  factor  associated  with 
reported  cases  among  homosexual  males._ 

To  date,  there  have  been  no  reported  cases  of  AIDS  among  known  female 
homosexuals.  The  frequency  and  type  of  sexual  activity  engaged  in  by 
homosexual  female  partners  differs  from  male  homosexual  behavior. 

Haitians:  Cases  of  AIDS  have  been  identified  among  Haitian  immigrants  to  the 
U.S.  and  also  within  the  resident  population  in  Haiti.  The  U.S.  Public  Health 
Service  has  epidemiologic  investigators  in  Haiti  attempting  to  determine 
whether  AIDS  cases  there  appear  to  represent  the  same  syndrome,  with  similar 
"risk"  factors  to  U.S.  cases. 

Tuberculosis  and  other  infectious  diseases  are  more  widespread  and  less 
well -controlled  in  Haiti  than  in  the  U.S.  The  hypothesis  has  been  made  that 
the  immune  system  of  some  Haitians  may  be  compromised  or  "overloaded"  by 
previous  exposure  to  infectious  agents. 

Hemophiliacs:  The  fact  that  some  hemophiliacs  have  developed  AIDS  has  led  to 
the  concern  that  AIDS  is  transmitted  through  blood  products.  It  is  important 
to  note  that  there  are  approximately  15.000  hemophiliacs  in  the  U.S.,  yet  only 
14  cases  of  AIDS  have  been  identified  among  this  reported  "high  risk  group." 
Hemophiliacs  receive  frequent  transfusions  of  Factor  VIII,  a  blood  component 
derived  from  several  thousand  donors  for  each  transfusion. 

Blood  clotting,  like  inflammation  and  wound  healing,  is  part  of  the 
body's  immune  system  response.  Hemophiliacs,  therefore,  may  be  characterized 
as  a  group  whose  ininune  system  is  compromised  by  an  inherited  defect. 

Preventive  Measures 

Based  upon  all  available  data  on  AIDS,  the  following  preventive  measures 
appear  prudent  until  the  exact  cause  of  the  condition  is  identified. 

1.  Illicit  drug  use  should  be  avoided,  particularly  intravenous  drug 

use; 

2.  Sexually  active  homosexuals  should  be  advised  to  limit  the 

number  of  sexual  partners  and  to  avoid  sexual  contact  with 
individuals  v/liose  past  health  history  is  not  known. 


243 


DEPARTMENT  OF  HEALTH 
Submitted  by:  Dr.  David  Axel  rod.  Commissioner 

Agency  Concerns; 

1.  Public  misconceptions:  The  Centers  for  Disease  Control  has  adopted 
a  premise  that  AIDS  is  caused  by  an  infectious  agent.  The  public  has 
interpreted  this  to  mean  that  AIDS  is  a  highly  communicable  disease.  Anxiety 
levels  have  risen  among  health  care  workers,  prison  guards  and  inmates, 
funeral  directors,  laundry  workers,  members  of  "high  risk"  groups  and  the 
general  public  -  primarily  in  New  York  City.  Daily  press  reports  of  specific 
AIDS  cases  and  highly  speculative  research  findings  published  almost  daily  in 
scientific  journals  has  built  a  body  of  belief  in  misinformation  and 
inaccurate  data  disseminated  by  opportunistic  researchers,  uninformed  medical 
professionals  and  government  spokespersons. 

2.  Inadequate  case  reporting  &  followup:  AIDS  is  not  yet  a  nationally 
•mandated  reportable  condition.  Voluntary  reporting  by  physicians  and 

hospitals  has  been  occurring,  however,  there  are  no  established  protocols  for 
required  case  data  or  followup,  resulting  in  a  lack  of  completeness, 
consistency  and  comparability  in  case  information.  Information  on  AIDS 
incidence  and  case  data  provided  back  to  all  states  monthly  by  the  Centers  for 
Disease  Control  has  been  sketchy,  often  inaccurate  and  significantly  delayed. 
Inconsistent  coding  of  cases  to  place  of  treatment  or  death,  rather  than  to 
place  of  residence  at  the  time  of  onset  of  the  syndrome  has  complicated  local 
epidemiologic  followup  and  research  activities. 

3.  Civil  rights  concerns:  The  designation  "high  risk"  has  been 
assigned  to  specific  sub-groups  within  the  population,  without  accurate 
denominator  counts  of  individuals  within  these  groups  as  compared  to  reported 
numbers  of  AIDS  cases.  This  labeling,  combined  with  growing  public  panic 
about  AIDS,  can  generate  or  reinforce  prejudicial  attitudes  and  lead  to 
infringement  of  the  human  and  civil  rights  of  AIDS  victims.  With  half  of  the 
AIDS  cases  nationwide,  New  York  State  should  take  a  leadership  role  in 
pursuing  epidemiologic  descriptions  of  actual  risk  to  sub-set  populations  and 
basic  science  research  activities  aimed  at  determining  the  characteristics  of 
such  populations  which  place  them  at  risk. for  immune  disorders. 

Department  Actions 

1.  Public  Information  &   Education:  The  Health  Department  has  granted  a 
total  of  $197,000  to  the  Gay  Men's  Health  Crisis,  Inc.  in  New  York  City  for 
use  in  carrying  out  educational  activities  within  the  gay  community.  The 
organization  has  established  a  toll-free  AIDS  hotline  and  also  provides 
personal  counseling  for  victims  and  family  members. 

A  total  of  50,000  brochures,  prepared  by  the  Health  Department,  have 
been  distributed  within  the  State  prison  system  in  an  effort  to  clarify 
misinformation  which  has  prompted  anxiety  among  guards  and  inmates.  Brochures 
currently  are  being  printed  for  dissemination  to  the  general  public  through 
local  health  departments,  health  care  facilities  and  other  State  agency 
outlets. 


244 


2.  Addressing  health  personnel  concerns:  In  March,  1983  the  Department 
disseminated  informatiop  on  AIDS  and  general  recommendations  for  patient  care 
protocols  to  all  hospitals  in  New  York  State.  While  we  do  not  consider 
isolation  of  AIDS  patients  necessary,  we  have  recommended  that  to  allay 
employee  concerns  hospitals  may  wish  to  follow  infection  control  protocols 
currently  in  place  for  patients  with  hepatitis  B.  Similar  information  has 
been  provided  in  response  to  inquiries  from  laboratory  personnel  handling  AIDS 
specimens  and  to  funeral  directors  who  expressed  concerns  about  embalming  the 
bodies  of  AIDS  victims. 

3.  Case  followup:  The  Department  has  worked  cooperatively  with  CDC, 
loca*!,  county  and  New  York  City  health  department  staff  on  AIDS  surveillance 
activities  to  obtain  voluntary  case  information  on  New  York  AIDS  patients.  A 
separate  surveillance  system  for  prison  cases  has  been  established  in 
conjunction  with  the  Department  of  Corrections. 

4.  Confidential  Mandatory  Reporting:  At  the  request  of  the  Department, 
the  Public  Health  Council  has  taken  emergency  action  to  make  reporting  of  AIDS 
cases  by  hospitals  and  physicians  mandatory  in  New  York  State  (effective  June 
20,  1983)  to  ensure  the  confidentiality  of  such  data  under  the  Public  Health 
Law.  The  department  will  develop  case  reporting  forms  and  detailed 
questionnaires  to  obtain  accurate,  consistent  case  data  for  use  in  case 
followup  and  research  activities.  The  case  reports  will  be  used  to  establish 
a  confidential  statewide  registry  of  New  York  cases. 

5.  Retrospective  Prison  Case  Studies:  The  departments  of  Health  and 
Corrections  have  worked  cooperatively  in  evaluating  AIDS  cases  among  prison 
inmates.  These  epidemiological  studies,  published  in  three  scientific 
articles,  have  demonstrated  that  virtually  all  AIDS  cases  among  inmates  in 
State  prisons  involve  individuals  with  a  prior  history  of  IV  drug  abuse  in  the 
New  York  City  area.  There  is  no  evidence  that  AIDS  was  contracted  during 
incarceration  or  passed  from  one  prisoner  to- another. 

6.  Laboratory  Services:  The  Department's  Center  for  Laboratories  and 
Research  (CL&R)  provides  general  laboratory  analysis  for  State  and  local 
government  agencies  and  special  laboratory  services  not  otherwise  available 
for  hospitals  and  diagnosing  physicians.  Ongoing  analyses  related  to  AIDS 
diagnosis  and  treatment  include: 

Serology  for:       hepatitis  virus 
cytomegalic  virus 
Barr-Epstein  virus 
Toxoplasmosis  parasite 
Various  fungi  and  yeasts 
Syphilis  (treponema  pallidum  antibody) 

Virus  isolation  of:  Cytomegalic  virus 

other  common  viruses 

Identification  and  characterization:  atypical  mycobacteria. 
Pathologic  diagnosis:  Pneumocystis  infection. 


245 


Recommendations: 

1.  Public  information:  The  Governor's  AIDS  task  force  should  mount  a 
coordinated,  multi-faceted  informational  campaign  in  an  effort  to  convey 
accurate  information  to  the  general  public,  to  dispel  rumors  and  allay 
unwarranted  public  fears  and  to  address  the  specific  concerns  of  service 
workers  who  by  nature  of  their  occupations  may  come  into  proximity  with  AIDS 
victims.  Planned  activities  include: 

a.  Establishment  of  an  AIDS  hotline  within  the  Health  Department  to 
answpr  public  inquiries. 

b.  Initiation  of  periodic  seminars  for  representatives  of  the  news 
media,  during  which  questions  may  be  addressed  to  State  agency  personnel 
knowledgeable  in  various  AIDS  issues.  It  is  hoped  that  this  technique  may 
prompt  the  press  to  look  toward  the  State  for  accurate  background  information 
and  balanced  prospective  on  "breaking"  AIDS  stories. 

c.  Distribution  of  informational  materials  on  AIDS  through  all 
appropriate  State  agency  outlets  and  mechanisms, 

d.  Identification  of  all  State  personnel  and  other  professional  and 
service  occupations  (physicians,  health  care  workers,  funeral  directors,  EMTs, 
institutional  employees,  drug  counselors,  life  guards,  etc.)  which  may  have 
concerns  about  AIDS.  Development  and  dissemination  of  accurate  informatiin  to 
address  the  general  and  specific  concerns  of  these  groups. 

2.  Research  Activities: 

•  a.  Prospective  Prison  Innate  Study:  The  department's  Bureau  of 
Communicable  Disease  Control  (CDC)  and  Center  for  Laboratories  and  Research 
(CLSR)  are  preparing  tandem  grant  applications  to  be  submitted  to  the  national 
Institute  of  Health  to  evaluate  New  York  State  Correctional  Facility  inmates 
who  are  previous  IV  drug-abusers  and  hence  "at  high  risk  for  AIDS." 

The  first  stage  of  this  research  project  involves  a  prospective 
cohert  evaluation  in  which  all  entering  inmates  will  fill  out  an  extensive 
risk  factor  questionnaire  on  drug  history  and  will  receive  a  thorough  physical 
exam  and  laboratory  evaluation.  The  second  phase  proposes  more  extensive  and 
sophisticated  laboratory  evaluation  of  blood  and  body  fluids  of  those 
identified  in  the  initial  workup  as  potentially  "high  risk"  for  AIDS. 

b.  Lupus/AIDS  research:  The  recent  finding  of  abnormalities  or 
"inclusions"  in  the  cells  of  patients  with  lupus  erythematosis,  some  forms  of 
cancer,  and  immunodeficiency  diseases  including  AIDS  will  be  investigated  by 
the  Department's  Center  for  Laboratories  and  Research.  A  grant  proposal  to 
expand  on-going  NIH-supported  research  activities  will  incorporate  a 
simultaneous  study  of  inclusions  in  AIDS  patients. 

c.  Hemophilia:  The  department's  recognized  expertise  in  hemophilia 
research  and  hematology  will  be  beneficial  in  further  investigation  of 
potential  risk  factors  associated  with  reported  AIDS  cases  among 
hemophiliacs.  Our  hematology  laboratory  is  currently  collaborating  with  the 


246 


Northeastern  New  York  branch  of  the  American  Red  Cross  1n  an  attempt  to 
develop  practical  methods  to  improve  the  yield  of  factor  VIII  concentrates 
made  by  cryoprecipitation  of  single  unit  or  small  pool  donations.  This  would 
provide  an  alternative  for  those  mildly  hemophiliac  patients  who  do  not 
require  large  pool  factor  VIII  concentrate.  Research  also  is  in  progress  to 
improve  the  safety  and  minimize  the  risk  of  potential  contamination  through 
factor  VIII  therapy.  Information  materials  addressing  the  fears  and  concerns 
of  hemophiliacs  are  currently  under  development. 

d.  Detection  of  Opportunistic  Infections:  AIDS  victims  most  often  die 
of  the  opportunistic  infections  or  Kaposi's  Sarcoma,  These  opportunistic 
infections  are  caused  by  an  exotic  group  of  microorganisms  including  bacteria, 
viruses,  fungii  and  yeast.  The  Department's  Center  for  Laboratories  and 
Research  currently  functions  as  a  statewide  reference  laboratory  for 
identification  of  most  of  these  organisms  and,  as  such,  provides  assistance  to 
State  laboratories  and  health  care  facilities  in  the  diagnosis  of  these 
agents.  As  an  extension  of  these  reference  services,  the  Center  will  work 
toward: 

--  Development  of  a  serological  test  for  Pneumocystis  carinii  (PCP) 
which  could  provide  early  warnings  of  the  impending  illness  and,  if  so,  allow 
therapeutic  intervention.  At  present  the  diagnosis  of  PCP  is  made  by 
microscopic  examination  of  bronchial  washings  from  suspected  patients. 

--  Development  of  a  simplified  test  for  toxoplasmosis  which,  along  with 
PCP,  is  one  of  the  more  frequently  detected  opportunistic  infections  in  AIDS 
victims. 

--  Enhancement  of  the  laboratory's  current  capability  for  isolating  and 
subgrouping  of  cytomegalovirus  (CHV)  virus  to  determine  if  a  particular 
subgroup  of  CMV  is  specific  to 'AIDS  patients. 


247 


DEPAKIMENT  OF  CORRECTIONAL  SERVICES 

Submitted  by:  Dr.  Raymond  Broaddus,  Assistant  Commissioner  foL  Health 
Services 

Background  Data 

Itie  first  confirmed  case  of  AIDS  in  the  State  prison  system  occurred  in 
November,  1981.  Since  that  time,  35  prison  AIDS  cases  have  been  reported, 
with  18  deaths  among  inmates.  Virtually  all  prison  inmates  with  confirmed 
aids'  had  a  previous  history  of  intravenous  drug  use  in  the  New  York  City 
area.  All  evidence  indicates  that  they  contracted  AIDS  prior  to 
incarceration,  since  the  condition  ajpears  to  have  a  one  to  two  year 
incubation  period. 

Agency  Concerns 

1.  Care  for  inmate  AIDS  patients;  The  correctional  health  service  is 
basically  designed  to  provide  ambulatory  care,  with  provisions  for  transfer  of 
inmates  requiring  acute  care  to  secure  wards  in  outside  hospitals.  While  this 
methodology  has  worked  reasonably  well  in  the  past,  it  is  being  severely 
tested  by  the  AIDS  situation.  Transferring  a  suspected  AIDS  case  to  an 
outside  hospital  for  diagnosis  and  treatment  is  fairly  routine.  The  problem 
develops  when  the  outside  facility  discharges  the  inmate  back  to  the 
institution.  The  inmate-patient  whose  opportunistic  infection  may  have  been 
arrested  or  stabilized  is  then  placed  in  the  receiving  institution's  infirmary 
which  is  geared  to  provide  intermediate  care  and,  when  indicated,  isolation. 
The  above  arrangement  has  become  problematic  given  the  limited  isolation 
capability  available  within  prison  infirmaries. 

2.  Protection  of  inmate  AIDS  patients;  While  it  is  widely  accepted 
that  the  primary  mission  of  the  Department  of  Corrections  is  to  confine 
individuals  committed  by  the  courts  so  that  society  at  large  will  be  protected 
from  them,  there  is  also  an  obligation  to  protect  inmates  from  other  inmates 
who  might  be  inclined  to  harm  them.  Given  the  existing  public  perception  of 
AIDS  as  a  "communicable  disease"  and  the  alarmingly  high  rate  of  anxiety  among 
corrections'  staff,  (both  uniform  and  non-uniform)  and  the  inmate  population, 
we  have  to  consider  AIDS  patients  as  being  victim  prone. 

Recommenda  t  ions 

To  provide  the  most  comprehensive  care  to  inmate-patients  who  have 
contracted  AIDS,  a  hospital  setting,  preferably  in  the  New  York  City  area,  is 
prerequisite.  The  bene'fits  to  be  derived  from  this  go  beyond  the  medical  and 
psychological  wellbeing  of  the  inmate-patients.  Since  all  prison  AIDS 
patients  are  from  the  greater  New  York  City  area,  their  care  in  the  City  would 
simplify  visits  from  family  members. 

Removing  the  AIDS  inmate-patients  from  the  prison  system  would  greatly 
alleviate  the  fear  and  paranoia  among  staff  and  more  importantly  would  greatly 
diminish  the  potential  for  a  hostile  and  volatile  reaction  on  the  part  of 
certain  inmate  factions. 


248 


The  Department  is  prepared  to  negotiate  reasonable  financial 
arrangements  with  a  contracting  hospital  subject  to  the  approval  of  Division 
of  Budget,  and  is  committed  to  working  out  the  security  considerations  for  the 
proposed  endeavor  so  that  the  interest  of  public  safety  will  be  appropriately 
served.  It  would  be  preferable  to  contract  with  New  York  City  for  the 
provision  of  security  services  for  the  secure  hospital  ward.  In  the  event, 
however,  that  this  proves  to  be  impractical  the  Department  is  prepared  to 
assume  this  responsibility. 


COMMISSION  OF  CORRECTION 

submitted  by  J.  Kevin  McNiff ,  Chairman 

Background 

In  addition  to  the  35  reported  cases  of  AIDS  among  State  prison  inmates, 
several  cases  have  been  diagnosed  among  prisoners  awaiting  sentencing  at  the 
Riker's  Island  facility.  Fears  and  concerns  are  being  expressed  by 
correctional  staff  at  all  levels  of  the  criminal  justice  system,  including 
State  and  City  facilities,  county  jails  and  local  lockups. 

Recommendations  i 

1.  Education;  Developnent  and  continuation  of  educational  programs  on 
AIDS  for  inmates  and  employees  is  essential  at  all  levels  of  the  criminal 
justice  system. 

2.  Evaluation  and  Diagnosis;  Protocols  are  needed  for  use  in  the 
prison  system  regarding  currently  accepted  procedures  for  evaluation  and 
diagnostic  workup  of  AIDS  patients.  The  plan  should  be  developed  on  a 
systemwide  basis  to  ensure  continuity  and  accuracy  in  evaluation,  treatment 
and  statistical  analysis. 

3.  Patient  Care;  Definite  plans  should  be  developed  for  uniformity  and 
continuity  of  care  at  the  primary,  secondary  and  tertiary  levels,  including 
the  possible  concentration/consolidation  of  services. 

4.  Safeguards;  Plans  should  be  developed  for  implementing  safeguards 
to  reduce  risks  for  unaffected  inmates  and  employees  within  the  limits  of 
current  knowledge  regarding  AIDS. 

5.  Program  Services;  It  is  important  to  ensure  that  AIDS 
inmate-patients  undergoing  treatment  are  afforded  reasonable  access  to  program 
services  as  their  conditions  permit,  particularly  if  consolidation  of  services 
is  anticipated. 


249 


INSURANCE  DEPARIMENT 

submitted  by  James  P.  Corcoran,  Superintendent  of  Insurance 

Background 

Ihe  Insurance  Department  has  the  responsibility  of  informing  the  public 
about  insurance  matters.  As  part  of  this  responsibility  the  Department  has 
directed  its  efforts  to  educate  insurance  consumers  as  to  the  scope  and  level 
of  coverage  available  to  them  under  health  insurance  contracts. 

issues 

A  comprehensive  health  insurance  policy  delivered  or  issued  for  delivery 
in  New  York  State  will  provide  coverage  for  AIDS  to  the  same  extent  that 
coverage  is  provided  for  other  illnesses.  Coverage  for  a  specific  disease  or 
syndrome  such  as  AIDS  may  not  be  excluded  from  the  contract.  If  the  health 
insurance  contract  covering  an  individual  who  has  contracted  AIDS  provides 
benefits  for  preventive  care  and  diagnostic  and  screening  services,  such 
coverage  will  be  provided  when  the  services  are  rendered  as  a  result  of  AIDS. 
It  should  be  noted,  however,  that  many  insurance  policies  do  not  provide 
coverage  for  preventive,  diagnostic  and  screening  services.  Other  policies, 
such  as  hospital  indemnity  insurance,  are  not  comprehensive  and  would  not. 
provide  benefits  for  physicians'  services  rendered  to  a  victim  of  AIDS. 

DIVTSION  OF  SUBSTANCE  ABUSE  SERVICES 

submitted  by  Julio  A.  Martinez,  Director 

Background 

Intravenous  (IV)  users  of  illicit  drugs  account  for  the  second  largest 
group  of  AIDS  victims;  in  New  York  City  IV  users  account  for  33  percent  of 
identified  AIDS  cases.  Current  Center  for  Disease  Control  reporting  methods 
count  AIDS  patients  who  are  both  homosexuals  and  IV  drug  users  only  as 
homosexuals.  This  significantly  undorcounts  the  proportion  of  IV  drug  users, 
who  may  account  for  as  many  as  25  percent  of  AIDS  victims  nationally. 

There  are  35,000  former  IV  drug  users  currently  in  methadone  maintenance 
and  drug-free  treatment  programs  in  New  York  State.  An  additional  250,000 
persons  have  used  drugs  intravenously  within  the  past  three  years;  about 
75,000  of  this  group  ar'e  current  IV  drug  users.  While  heroin  is  the  major 
abused  drug,  the  recent  sharp  increase  in  cocaine  use  (which  is  continuing  to 
climb)  has  contributed  to  a  further  growth  of  IV  users. 


250 


The  problem  is  most  acute  in  New  York  City,  where  the  majority  of  IV 
drug  users  reside  and  where  there  is  a  proliferation  of  "shooting  galleries." 
Injection  paraphernalia  are  rented  at  the  galleries,  where  observations 
indicate  that  needles  are  almost  never  sterilized  and  are  typically  used  by  at 
least  25  persons  before  being  discarded.  There  are  a  minimum  of  1,000  such 
"galleries"  in  New  York  City. 

Reccanmendations 

'  1.  Education:  Education  efforts  should  be  instituted  to  alleviate 
undue  concern  among  clients  and  program  staff,  to  ensure  reporting  of 
suspected  cases  and  delivery  of  prompt  medical  attention,  and  to  reduce 
activities  currently  implicated  in  AIDS,  such  as  IV  drug  use.  All  the 
publicity  that  AIDS  has  received  in-  the  media  has  caused  concern,  similar  to 
that  of  the  prison  guards,  among  program  and  laboratory  staff  personnel.  The 
education  efforts  should  be  targeted  for  treatment  program  staff,  for  current 
and  former  IV  dryg  users,  '^nd   for  the  spouses  and  families  of  these 
individuals.  - 

2.  Monitoring;  Monitoring  should  t>e  undertaken  to  assess  the  incidence 
of  AIDS  among  former  and  present  IV  drug  users,  to  ensure  identification  of 
all  AIDS  cases,  to  define  those  groups  at  risk,  and  to  note  any  changes  in 
risk  groups.  These  efforts  should  include  monitoring  of  former  IV  users  now 
in  methadone  or  drug-free  treatment  for  AIDS  symptoms  and  for  knowledge  of 
persons  who  have  AIDS  symptoms,  and  monitoring  and  epidemiological 
surveillance  of  active  street  IV  drug  users. 

3.  Research;  Research  is  necessary  to  explore  and  define  the  etiology 
of  AIDS,  to  study  possible  methods  of  transmission,  and  to  ascertain  possible 
effective  treatment  and  preventive  measures.  Research  efforts  should  include 
reexamination  of  pathology  reports  and  tissue  samples  of  suspected  but 
unconfirmed  IV  user  AIDS  deaths;  case  control  studies  among  IV  drug  users, 
"shooting  gallery"  IV  drug  users,  and  current  IV  AIDS  cases,  and  natural 
history  studies  of  active  IV  AIDS  cases. 


OFFICE  OF  MENTAL  HEALTH  i  . 

submitted  by  William  Morris,  Acting  Commissioner 

Background 

As  of  May  31,  1983,  among  the  forensic  facilities  and  New  York  City 
psychiatric  centers,  one  confirmed  AIDS  case  was  reported.  This  patient  is 
being  treated  in  a  community  hospital.  There  has  also  been  a  suspicion  of 
AIDS  in  the  death  of  two  staff  persons  over  the  last  year. 


251 


The  Office  of  Mental  Health  (OMH)  serves  some  23,000  inpatients  in  27 
adult  and  forensic  psychiatric  centers  throughout  the  State.  An  additional 
110,000  patients  are  served  through  the  outpatient  system.  Medical  literature 
and  the  general,  yet  limited,  knowledge  available  regarding  AIDS  indicates 
that  two  subsets  of  the  OMH  inpatient  population  may  be  at  significant  risk  of 
contracting  the  disorder:  the  1,325  forensic  patients  admitted  each  year  to 
two  OMH  free-standing  forensic  faciities  and  four  regional  forensic  units;  and 
some  11,000  patients  admitted  annually  to  our  five  New  York  City  psychiatric 
centers. 

If  homosexuality  and  intravenous  drug  abuse  are  contributing  factors  in 
the  development  of  AIDS,  the  OMH  forensic  population,  which  sometimes  mirrors 
the  correctional  population  and  patients  admitted  to  New  York  City  psychiatric 
centers,  where  there  is  a  history  of  high  incidence  of  drug  abuse  on 
admission,  are  patient  groups  that  may  require  special  intervention.  These 
assumptions  can  be  more  seriously  considered  when  we  recognize  that: 

•  90%  of  all  patients  admitted  to  Central  New  York  Psychiatric  Center 
(CNYPC) ,  an  acute  care  forensic  facility,  come  directly  from  State 
correctional  facilities  where  they  are  serving  sentences.  Upon  discharge  from 
CNYPC,  patients  usually  return  to  the  correctional  system. 

•  98%  of  all  patients  admitted  to  Mid-Hudson  Psychiatric  Center  (MHPC) 
come  directly  from  county  jails.  This  population  includes  patients  found 
incompetent  to  stand  trial,  and  those  not  responsible  by  reason  of  mental 
disease  or  defect.  Upon  discharge,  depending  on  their  legal  status,  these 
patients  may  be  transferred  to  jails,  prisons,  or  adult  psychiatric  centers. 

•  The  incidence  of  intravenous  drug  abuse  among  patients  admitted  to 
New  York  City  Psychiatric  Centers  may  be  as  high  as  20%. 

Concerns 

1.  Care  for  AIDS  patients:  OMH  facilities  will  encounter  difficulties 
in  dealing  with  AIDS  patients  due  to  a  limited  ability  to  provide  in-house 
treatment,  and  current  difficulties  OMH  facilities  encounter  in  acquiring 
services  from  community  hospitals.  The  demand  by  some  hospitals  that  OMH 
facilities  send  24-hour  staff  supervision  with  patients  admitted  for  care 
imposes  a  heavy  burden  on  already  diminished  inpatient  staff  resources. 

2.  Information;  There  is  a  need  for  OMH  facilities  to  receive  current 
information  and  guidance  on  prevention  and  treatment  of  AIDS  patients. 

Recommendations 

1.  An  interagency  information/education  process  should  be  considered  to 
reduce  the  fear  and  stigma  attached  to  this  syndrome. 


252 

2.  CMH  would  like  acditional  clinical  support  and  direction  from  the 
Department  of  Health  in  planning  for  the  medical  treatment  needs  of  OMH 
patients,  including  laboratory  diagnoses. 

3.  Ihe  possibility  of  developing  an  interagency  uniform  screening 
process,  to  be  used  at  admission  and  discharge,  should  be  considered.  This 
system  would  assist  in  early  detection  and  more  accurate  diagnosis  of  the 
syndrome.  Blood  transfusion  history  should  be  considered  in  the  process. 

4.  Statewide  interagency  guidelines  should  be  developed  defining 
adequate  diagnosis  and  preventive  measures  for  AIDS.  A  uniform  reporting 
procedure,  which  generates  consistent  data,  should  be  considered  when 
developing  such  guidelines. 

5.  Research  being  conducted  at  the  State  level  or  through  CDC  should _ 
also  be  targeted  to  potential  high  risk  groups  in  the  OMH  inpatient  population. 

6.  OMH  requests  the  assistance  of  the  Department  of  Health  in 
identifying  community  hospitals  in  each  region  for  the  prudent  transfer, 
treatment  and  isolation  of  suspected  or  confirmed  AIDS  cases. 

Mr.  Weiss.  Mr.  Rosen,  in  the  course  of  your  testimony  you  re- 
ferred to  the  fact  that  only  patients  with  the  CDC-defined  AIDS 
have  any  chance  at  all  of  receiving  assistance  from  the  Govern- 
ment. Has  there  been  any  discussion  with  CDC  or  SSA  that  you 
know  of  about  altering  the  definition  of  AIDS  for  the  purpose  of 
disability  benefits? 

Mr.  Rosen.  Not  that  we  know  of.  There  has  been  no  discussion 
with  the  CDC  from  ourselves  and  from  any  of  our  attorneys.  But 
we  are  beginning  to  get  more  and  more  complaints  from  more  and 
more  people,  people  who  have  diseases  like  herpes  oster,  people 
who  have  programmable  symptoms  of  AIDS  and  who  really  should 
not  be  working  but  are  not  able  to  get  disability  insurance. 

The  CDC  definition  is  a  very  limited  definition  of  a  certain 
number  of  diseases. 

Mr.  Weiss.  We  have  had  testimony  about  the  medical  cost  per 
patient,  and  how  it  overburdens  not  just  the  individuals,  making 
them  in  many  instances  destitute,  but  also  the  institutions  and  the 
localities  in  which  they  receive  the  health  care. 

The  numbers  we  have  received  range  from  $60,000  to  $100,000. 
Do  you  know  how  those  figures  were  arrived  at  and  whether  they 
are  accurate? 

Mr.  Rosen.  Those  are  not  my  figures,  except  I  can  tell  you  those 
figures  are  accurate.  I  am  a  social  worker,  Mr.  Chairman,  I  have 
clients,  I  have  about  four  clients  now  who  have  AIDS.  One  of  my 
clients  passed  away  3  weeks  ago.  He  was  a  man  who  made  $40,000 
a  year  at  the  time  of  his  death— after  being  in  the  hospital  four 
times  over  the  course  of  2  years,  his  hospital  bills  were  approxi- 
mately $100,000.  I  don't  know  what  the  numbers  were  testified 
about  before  would  come  to.  But  I  can  tell  you  they  are  certainly 
accurate  based  on  reality. 

Mr.  Weiss.  Did  that  involve,  if  you  know,  any  costs  for  the  ex- 
perimental drugs  such  as  interferon  that  were  referred  to  earlier 
by  Mr.  Ferrara? 

Mr.  Rosen.  No,  they  were  not,  not  in  my  cases. 


253 

Mr.  Weiss.  And  finally,  in  the  course  of  your  testimony,  I  think 
on  page  9,  you  refer,  but  only  obliquely,  to  what  you  see  as  the  po- 
tential for  the  disease,  the  epidemic,  crossing  the  relatively  narrow 
at-risk  communities  where  they  are  now  prevalent. 

Could  you  expand  on  that?  I  am  not  sure  that  I  really  understood 
what  you  were  saying. 

Mr.  Rosen.  Well,  most  of  the  researchers — not  everyone  would 
agree  with  this — but  many  researchers  would  say  that  whatever 
this  is,  it  seems  to  be  transmitted  sexually.  And  people  in  their  life- 
time at  different  points  in  their  lives  have  different  types  of  sexual- 
ity. People  are  not  static  in  their  sexuality.  People  are  not  all  het- 
erosexual, they  are  not  all  homosexual.  Some  people  are  bisexual. 
And  throughout  their  lives  they  cross  over.  It  is  sort  of  a  line  that 
goes  back  and  forth.  Not  everybody  goes  back  and  forth,  but  some 
people  do,  more  people  than  you  might  want  to  hear  about. 

If  those  people,  and  people  are  bisexual,  and  people  are  having 
sexual  contacts  with  men  and  with  women,  it  stands  to  reason  that 
somewhere  down  the  line,  if  we  have  an  incubation  period  of  from 
1  to  3  years  here,  the  epidemic  is  going  to  spread  out  of  it  to  the  at- 
risk  populations. 

Mr.  Weiss.  Thank  you  very  much. 

Mr.  Walker. 

Mr.  Walker.  I  have  no  questions. 

Mr.  Weiss.  Mr.  McCandless? 

Mr.  McCandless.  I  have  no  questions. 

Mr.  Weiss.  I  guess  I  have  one  area  that  I  want  to  ask  about. 

You  referred  to  the  Doctors  Against  AIDS,  was  it? 

Mr.  Daire.  Yes,  Dallas  Doctors  Against  AIDS. 

Mr.  Weiss.  Tell  me  about  that.  What  is  it  about? 

Mr.  Daire.  First  of  all,  none  of  these  doctors  are  Dallas  doctors. 
They  all  live  in  suburban  areas  of  the  Dallas  region.  Two  are  medi- 
cal directors,  one  is  a  dentist,  and  the  others  are  doctors  of  philos- 
ophy. None  of  them  have  approached  the  subject  of  AIDS  from  a 
combating  AIDS  standpoint.  In  fact,  attached  to  my  testimony  is  an 
introduction  of  a  bill  by  Representative  Bill  Severa  which  was  very 
strongly  supported  by  the  Dallas  Doctors  Against  AIDS,  and  it  is 
very  easy  to  see  that  it  is  not  really  Dallas  Doctors  Against  AIDS, 
it  is  Dallas  doctors  against  homosexuality  and  our  lifestyle,  nothing 
to  do  with  AIDS,  except  the  fact  that  they  use  AIDS  as  a  weapon 
against  us. 

Mr.  Weiss.  The  attachment  that  you  have  will  be  entered  into 
the  record,  without  objection. 

Incidentally,  I  had  forgotten  to  request  earlier  that  the  attach- 
ment Dr.  Siegal  had  in  his  testimony  also  be  entered  into  the 
record. 

Finally,  Mr.  Collins,  how  real  is  the  concern  that  individuals 
have,  in  your  estimation,  about  having  their  rights  of  privacy  and 
confidentiality  violated  by  the  Government? 

We  have  heard  references  not  only  from  you,  but  from  other  wit- 
nesses. Is  that  an  abstract  civil  liberties  concern,  or  is  this  a  real 
concern  of  real  people  about  what  will  happen  to  them  individual- 
ly? 

Mr.  Collins.  I  believe  it  is  a  real  concern,  as  has  been  demon- 
strated several  times  today  in  other  testimony. 


26-097    0—83 17 


254 

Moreover,  we  have  heard  the  call  for  a  central  information  bank 
for  research  purposes.  And  I  would  fully  support  that.  But  should 
such  an  information  bank  be  set  up,  there  does  need  to  be  some 
sort  of  control  over  that  kind  of  information.  We  have  seen  a  blos- 
soming of  lists.  In  my  limited  amount  of  work  that  I  have  done,  I 
have  heard  of  lists  in  the  blood  centers,  I  have  heard  of  lists  in  the 
CDC,  I  have  heard  of  lists  in  the  health  departments,  in  State 
health  departments,  I  have  heard  of  the  CDC  sending  a  list  to  the 
State  health  departments,  I  have  heard  of  mistakes  by  the  CDC. 
And  that  is  the  real  issue. 

The  issue  is  human  error  as  well.  There  is  room  for  human  error. 
The  more  you  generate  more  lists,  the  much  more  room  for  human 
error.  There  needs  to  be  some  built-in  protection,  especially  in  light 
of  the  information  that  is  being  collected. 

Mr.  Weiss.  I  want  to  thank  all  of  you,  indeed  all  of  our  witnesses 
today.  Your  testimony  was  just  outstanding.  We  appreciate  your 
giving  us  the  benefit  of  your  knowledge  and  expertise  in  this  area. 

I  know  that  we  will  make  good  use  of  the  testimony  in  the  course 
of  the  ongoing  proceedings  of  this  subcommittee. 

With  your  testimony,  the  hearings  today  are  concluded,  if  there 
are  no  further  questions  by  members  of  the  panel. 

Tomorrow  we  will  reconvene  at  9:30  and  we  will  hear  from  the 
administration  and  its  representatives  as  well  as  from  public 
health  officers  from  various  parts  of  the  country.  The  time  for  the 
hearing  tomorrow  morning  is  9:30.  It  will  be  in  this  room. 

The  subcommittee  now  stands  in  recess  until  tomorrow  morning. 

[Whereupon,  at  4:10  p.m.,  the  subcommittee  adjourned,  to  recon- 
vene at  9:30  a.m.,  Wednesday,  August  2,  1983.] 


FEDERAL  RESPONSE  TO  AIDS 


TUESDAY,  AUGUST  2,  1983 

House  of  Representatives, 
Intergovernmental  Relations 
AND  Human  Resources  Subcommittee 
OF  THE  Committee  on  Government  Operations, 

Washington,  D.C. 

The  subcommittee  met,  pursuant  to  notice,  at  9:41  a.m.,  in  room 
2154,  Rayburn  House  Office  Building,  Hon.  Ted  Weiss  (chairman  of 
the  subcommittee)  presiding. 

Present:  Representatives  Ted  Weiss,  John  Conyers,  Jr.,  Sander 
M.  Levin,  Buddy  MacKay,  Robert  S.  Walker,  Alfred  A.  (Al) 
McCandless,  and  Larry  E.  Craig. 

Also  present:  Representative  Barbara  Boxer. 

Staff  present:  James  R.  Gottlieb,  staff  director;  Susan  Steinmetz, 
professional  staff  member;  James  F.  Michie,  chief  investigator; 
Gwendolyn  S.  Black,  secretary,  and  Hugh  Coffman,  minority  pro- 
fessional staff,  Committee  on  Government  Operations. 

Mr.  Weiss.  The  subcommittee  will  come  to  order. 

The  purpose  of  this  2-day  hearing  is  to  explore  a  number  of  ques- 
tions relating  to  the  outbreak  of  AIDS: 

Are  adequate  resources  available  for  research,  treatment,  and 
prevention? 

How  comprehensive  are  the  research  and  surveillance  activities? 

Has  the  Government's  response  been  timely? 

What  is  the  extent  of  coordination  of  the  efforts  to  fight  the  epi- 
demic? 

What  is  the  scope  of  public  education  and  how  effective  is  it? 

How  accessible  is  health  care  for  persons  with  AIDS? 

Is  the  confidentiality  of  those  who  suffer  from  AIDS  being  pro- 
tected? 

After  listening  to  the  witnesses  who  testified  before  the  subcom- 
mittee yesterday,  I  have  grave  concerns  about  the  Federal  Govern- 
ment's response  to  the  AIDS  emergency. 

Three  men  who  have  AIDS  courageously  came  forward  and  told 
their  individual  stories.  The  most  disturbing  aspect  of  their  testi- 
mony was  what  they  viewed  as  an  agonizingly  slow  response  by 
Federal  health  agencies.  One  person  suffering  from  AIDS  said,  I 
came  here  today  in  the  hope  that  my  epitaph  would  not  read  'Died 
of  red  tape'." 

A  physician  echoed  that  sentiment  when  he  described  the  Feder- 
al effort  as  "bordering  on  the  negligent." 

In  the  testimony  of  the  16  people  we  heard  from  yesterday — rep- 
resentatives of  the  affected  communities,  the  medical  and  research 

(255) 


256 

communities,  and  volunteer  service  organizations — most  frequently 
vocalized  was  the  desperate  need  for  additional  funding.  Money  is 
required  for  greatly  expanded  epidemiology  research  and  surveil- 
lance activities,  for  dissemination  of  accurate  information  about 
AIDS  to  both  the  medical  community  and  the  public,  and  for  an 
array  of  support  services  such  as  outreach,  early  screening,  ther- 
apy, legal  assistance,  home  and  hospice  care,  medical  referrals,  and 
crisis  intervention. 

The  witnesses  also  spoke  about  specific  weaknesses  in  the  Feder- 
al response  to  this  public  health  emergency,  weaknesses  that  de- 
serve the  close  scrutiny  of  this  subcommittee:  a  lack  of  adequate 
financial  resources  for  research  into  the  cause,  cure,  and  preven- 
tion of  the  disease;  a  lack  of  a  comprehensive  plan  to  coordinate 
research  efforts  across  the  country,  and  a  lack  of  sensitivity  toward 
the  victims'  need  for  confidentiality. 

To  meet  even  the  limited  AIDS  research  budget  it  has  allocated 
to  date,  it  became  clear  yesterday  that  the  Federal  Government 
may  be  funneling  funds  away  from  crucial  research  activities  in 
other  health  areas.  The  impression  that  the  administration  is  trad- 
ing one  public  health  program  for  another  to  satisfy  politically  im- 
posed budget  constraints  is  inescapable. 

There  was  also  evidence  to  suggest  that  the  present  epidemic  of 
fear  could  have  been  avoided  if  an  aggressive  education  and  re- 
search campaign  had  been  undertaken  by  Centers  for  Disease  Con- 
trol. 

The  many  concerns  raised  by  these  witnesses,  when  combined 
with  the  refusal  of  the  Department  of  Health  and  Human  Services 
to  provide  this  subcommittee  with  full  access  to  its  staff  and 
records  during  the  course  of  our  oversight  work,  lead  me  to  ques- 
tion very  seriously  whether  the  administration  is  indeed  committed 
to  mobilizing  maximum  Federal  resources  as  swiftly  as  is  humanly 
possible  to  conquer  this  dread  disease. 

I  look  forward  to  the  testimony  of  the  officials  representing  HHS 
who  will  explain  the  Federal  position  in  the  second  half  of  today's 
hearing. 

Because  of  the  refusal  of  HHS,  beginning  with  Secretary  Heck- 
ler, to  cooperate  with  this  subcommittee  in  discharging  our  consti- 
tutional responsibilities,  we  are  lacking  the  full  documentation 
that  would  normally  be  available  to  us  prior  to  questioning  admin- 
istration officials.  Consequently,  I  intend  to  schedule  future  hear- 
ings once  we  have  obtained  the  appropriate  documents. 

We  will  begin  with  the  testimony  of  three  public  health  profes- 
sionals. But  before  I  call  on  them,  let  me  take  note  of  the  fact  that 
we  do  have  a  quorum  present;  that  we  again  have  Mrs.  Boxer,  who 
is  a  member  of  the  full  committee,  with  us.  Without  objection,  she 
will  continue  to  participate  with  the  subcommittee  in  the  course  of 
today's  hearings. 

And  at  this  time  let  me  call  on  our  ranking  minority  member, 
Mr.  Walker,  for  whatever  opening  remarks  he  may  choose  to  make. 

Mr.  Walker.  Thank  you,  Mr.  Chairman. 

I  think  that  you  have  outlined  with  some  specificity  the  concerns 
that  were  raised  by  the  groups  that  appeared  before  us  yesterday, 
and  the  individuals  that  appeared  before  us.  Hopefully  today's 
hearings  will  begin  to  put  some  of  those  concerns  into  perspective. 


257 

by  giving  us  an  opportunity  to  hear  from  the  professionals  in  the 
Government  who  have  been  dealing  with  the  problem  and  will  give 
this  subcommittee  and  the  Nation  a  little  better  idea  of  what  the 
response  has  been  to  the  AIDS  problem,  and  what  our  future 
course  of  action  will  be  with  regard  to  same. 

Thank  you,  Mr.  Chairman. 

Mr.  Weiss.  Thank  you,  Mr.  Walker. 

Is  there  any  other  member  of  the  subcommittee  who  wishes  to 
make  an  opening  comment? 

Mrs.  Boxer? 

Mrs.  Boxer.  Thank  you,  Mr.  Chairman.  Again  I  have  an  opportu- 
nity to  thank  you  for  allowing  me  to  sit  in  with  the  subcommittee 
and  tell  you  that  I  share  the  concern  that  you  expressed  yesterday, 
I  share  with  you  the  concern  that  you  expressed  regarding  this 
whole  matter — concern  about  the  inadequate  level  of  funding  for 
AIDS  research,  concerned  about  the  slow  pace  of  Federal  action, 
concerned  about  the  lack  of  an  overall  program  emanating  from 
the  Federal  Government,  and  I  am  very  concerned  about  the 
stigma  given  to  the  Haitian  community.  I  think  Haitians  have 
been  stigmatized  with  what  appears  to  be  sloppy  questioning  and 
research.  I  am  hopeful  we  can  get  to  the  bottom  of  that  today. 

I  am  also  looking  forward  to  the  testimony  so  that  I  can  leave 
this  room  today  feeling  a  little  better  about  the  state  of  this  whole 
program. 

Thank  you  again  for  this  opportunity. 

Mr.  Weiss.  Thank  you  very  much,  Mrs.  Boxer. 

We  have  two  panels  this  morning.  Our  schedule  is  to  continue 
through  the  morning  and  the  early  afternoon.  We  will  have  to  ad- 
journ when  the  House  begins  to  consider  legislation  which  this  sub- 
committee is  directly  involved  in,  specifically  the  revenue  sharing 
program.  I  anticipate  that  to  be  somewhere  between  1  and  2  p.m., 
therefore,  we  will  not  be  breaking  for  lunch.  We  may  take  a  brief 
break  just  to  allow  all  of  us  a  chance  to  move  about  for  a  little  bit. 

We  will  begin  the  testimony  with  three  public  health  profession- 
als: Dr.  David  Sencer,  commissioner  of  health,  New  York  City,  and 
Dr.  Mer\-yn  Silverman,  director  of  health,  San  Francisco,  will  ex- 
plain how  the  local  health  departments  in  the  two  U.S.  cities  most 
hard  hit  by  the  epidemic  are  coping.  We  will  also  hear  from  Stan- 
ley Matek,  immediate  past  president  of  the  American  Public 
Health  Association,  who  will  offer  a  broad  public  health  perspec- 
tive. 

We  will  seek  to  learn  the  panel's  views  regarding  the  sufficiency 
of  resources  available  to  public  health  workers  at  the  local  level. 

As  you  gentlemen  may  know,  this  subcommittee  is  an  investiga- 
tive and  oversight  committee  and,  therefore,  swears  in  its  wit- 
nesses. So  if  you  would  at  this  point  rise,  I  will  offer  the  oath  of 
affirmation. 

Do  you  affirm  or  swear  that  you  will  tell  the  truth,  the  whole 
truth,  and  nothing  but  the  truth? 

Let  the  record  indicate  that  each  witness  nodded  in  the  affirma- 
tive. 

Thank  you  very  much. 

Let  me  welcome  all  three  of  you  on  behalf  of  the  subcommittee. 
Dr.  Sencer,  if  you  will  begin,  we  will  continue  from  there. 


258 

STATEMENT  OF  DAVID  J.  SENCER,  M.D.,  M.P.H.,  COMMISSIONER 
OF  HEALTH,  NEW  YORK  CITY,  N.Y. 

Dr.  Sencer.  Thank  you,  Mr.  Chairman,  members  of  the  commit- 
tee. 

I  am  Dr.  David  Sencer,  commissioner  of  health  in  the  city  of  New 
York.  It  is  an  honor  to  appear  before  you  today  to  discuss  the  prob- 
lems that  the  city  is  facing  because  of  the  continuing  occurrence  of 
AIDS.  It  is  a  problem  to  the  city;  it  is  a  problem  to  the  people  with 
AIDS,  to  the  general  public  and  the  city  government. 

First,  to  talk  of  the  problems  that  the  people  with  AIDS  have.  As 
of  July  13,  1983,  877  individuals  in  New  York  City  had  been  diag- 
nosed to  have  AIDS.  At  least  351  have  died.  Seventy  percent  were 
homosexual  or  bisexual  males,  and  22  percent  were  IV  drug 
abusers. 

These  data  illustrate  the  extent  of  the  problem.  But  what  do 
these  figures  mean  to  the  persons  with  AIDS?  It  means  a  long  de- 
bilitating illness,  usually  culminating  in  death.  It  means  loss  of 
income.  It  means  medical  bills  that  can't  be  paid  because  insurance 
coverage  runs  out,  because  coverage  is  disallowed  for  many  of  the 
procedures  that  are  necessary  for  the  diagnosis  and  often  experi- 
mental treatment  or  because  they  have  no  coverage. 

It  means  discriminatory  actions  by  employers,  landlords,  and  the 
general  public.  It  means  a  constant  threat  to  the  privacy  of  the  in- 
dividual with  the  disease — the  risk  of  public  knowledge  of  an  indi- 
vidual's sexual  orientation  or  illegal  habit  or  residence  status. 

I  would  like  to  add  a  word  on  behalf  of  the  plight  of  the  drug 
addict.  They  have  no  spokespersons.  Yet,  they  represent  at  least  20 
percent  of  the  diagnosed  cases  in  New  York  City.  It  is  a  tragedy 
that  the  programs  for  drug  abuse  that  could  obviate  the  need  for 
dirty  needles  are  at  this  point  in  time  being  cut  back  when  a  new 
and  deadly  health  problem  is  moving  through  this  population. 

What  are  the  problems  for  the  general  public?  Fear  of  the  un- 
known. How  is  this  expressed?  By  suggestions  of  quarantine,  by  dis- 
criminatory actions,  by  irrational  behavior. 

What  are  the  problems  for  the  city?  Coping  with  close  to  1,000 
persons  in  need  of  a  completely  different  type  of  assistance,  and  a 
different  approach  to  problems.  At  any  one  time,  about  200  pa- 
tients are  in  the  hospitals  of  New  York  City  requiring  complicated 
intensive  care,  expensive  beyond  comprehension.  For  each  one  of 
the  persons  in  the  hospital,  there  are  two  patients  not  in  need  of 
hospitalization,  but  in  need  of  income  maintenance,  housing,  home 
nursing  care,  a  job.  Because  of  the  diagnosis,  barriers  are  erected 
that  would  not  be  there  for  a  patient  with  a  disease  such  as  Hodg- 
kin's  Disease. 

What  approaches  have  been  taken  by  New  York  City  to  cope 
with  these  problems?  First  has  been  the  need  for  an  educated  pro- 
fessional population,  for  without  this  base  it  is  difficult  to  develop 
patient  and  public  understanding.  A  monthly  seminar  is  held  for 
all  health  care  professionals  working  with  the  patients,  to  facilitate 
early  and  informal  interchange  of  information.  To  develop  this  in- 
formation, an  intensive  surveillance  function  is  provided  by  the 
health  department  in  conjunction  with  and  support  of  the  Centers 
for  Disease  Control. 


259 

The  information  from  this  surveillance  is  reported  monthly,  a 
copy  of  which  is  attached  to  this  testimony.  We  are  about  to  enter 
into  a  collaborative  study  to  verify  the  reporting  of  cases  in  the 
surveillance. 

Second,  there  is  a  need  for  informed  and  understanding  care 
givers.  To  this  extent.  Mayor  Koch  has  established  an  interagency 
task  force  which  meets  biweekly,  with  representatives  from  all  the 
city  agencies  involved  with  health,  welfare,  housing,  and  other 
social  services.  This  group  is  augmented  by  representatives  of  the 
gay  community  and  the  Haitian  community,  as  well  as  persons 
with  AIDS  and  other  concerned  groups.  The  role  of  this  group  is  to 
identify  problems  and  seek  ways  in  which  they  can  be  solved. 

Unfortunately,  they  cannot  all  be  solved.  For  example,  there  is 
no  way  in  which  such  a  group  can  prevent  loss  of  jobs  because  a 
patient  has  AIDS.  But  it  can  be  established  that  this  is  a  problem 
and  ways  sought  to  educate  employers  that  AIDS  patients  are  not  a 
risk  to  others  in  the  normal  course  of  employment.  This  is  being 
done,  for  example,  by  working  with  the  New  York  City  Business 
Group  for  Health,  which  reaches  most  of  the  major  employers  and 
the  personnel  departments  of  most  corporations. 

Also,  there  is  a  need  to  keep  the  health  care  providers  supplied 
with  current  accurate  information  so  that  patient  care  is  not  com- 
promised by  ignorance.  This  is  a  subject  of  another  monthly  meet- 
ing of  hospital  administrators,  labor  unions,  and  physician  groups. 

Third,  there  is  a  need  to  provide  accurate  and  timely  information 
to  the  public  to  prevent  or  modify  concerns.  This  is  done  through 
pamphlets,  hotlines,  speaker's  bureaus,  press  conferences.  The 
mayor's  last  statement  is  attached. 

I  could  continue  to  describe  the  multitude  of  activities  undertak- 
en in  the  city,  but  I  prefer  to  focus  on  two  issues:  confidentiality 
and  costs. 

There  is  great  concern  among  the  various  risk  groups  that  their 
privacy  not  be  invaded,  and  that  there  be  guarantees  that  when 
their  names  are  given,  there  will  be  adequate  protection  of  the 
names  from  groups  who  have  no  need  to  know.  It  is  also  in  the  in- 
terest of  the  individual  patient  and  his  health  care  giver  to  have 
available  in  a  protected  manner  the  names,  so  that  patients  can  be 
contacted  when  necessary,  if  new  tools  of  diagnosis  and  treatment 
become  available. 

It  is  also  in  the  interest  of  scientists  engaged  in  finding  cause, 
prevention  and  cure  to  be  able  to  match  records  accurately.  It  is  for 
these  reasons  that  the  city  health  department  is  not  furnishing 
names  to  other  agencies,  but  has  developed  a  system  to  assure  the 
safeguarding  of  names  within  the  department  and  providing 
matching  services  to  others  in  the  legitimate  medical  research  com- 
munity. 

Finally,  a  few  words  about  costs.  The  cost  of  suffering  and  social 
ostracism  cannot  be  measured.  The  costs  of  medical  care  for  the 
syndrome  are  next  to  impossible  to  estimate.  But  let  us  make  a  few 
assumptions,  erring  on  the  conservative  side. 

We  estimate  about  200  patients  to  be  in  hospitals  in  New  York 
City  on  any  given  day.  If  we  assume  a  cost  of  care  to  be  $1,000  per 
day,  this  leads  to  an  annual  cost  of  $73  million.  If  this  is  not  cata- 
strophic illness,  I  don't  know  what  is. 


260 

I  would  hope  that  a  lasting  legacy  to  those  who  have  suffered 
from  AIDS  might  be  a  reconsideration  of  reimbursement  policies 
with  a  goal  of  broader  coverage  for  those  illnesses  that  no  individu- 
al or  no  single  community  can  afford. 

I  will  be  pleased  to  answer  any  questions. 

Mr.  Weiss.  Thank  you  very  much.  All  the  attachments  men- 
tioned in  the  course  of  your  statement  will,  without  objection,  be 
entered  into  the  record. 

[The  attachments  follow:] 


261 

AIDS  -  SURVEILLANCE  UPDATE* 
JULT  27,  1983 


SimVEILLANCE  OFTICE:   (212)  566-3630 
♦THESE  DATA  ARE  OF  A  PRELIMINARY  NATURE  FROM  AN  ONGOING  INVESTIGATION 


262 


.  -   i               !  '     ■  -■   ;■'■'-■■•:; 

.  ■:       .;    :.J.  \'  -. 

v\  ^^ 

—             : 

./:  ■■'.-.  :;:p:^.:J.J--i:_^r.... -■■■ 

-:.:.:X.17.~    !_.  .      .  :       -       ■■ 

':l~:^:.-      t 

- 

■::IL--i:^    <S  ■ 

_5J    '-^ZVl    UJ.^ia^ 

■  :t—:  '.'.''    '  : 

^5£ 

;.  ■ : 

263 


NEW  YORK  CITY  SUBVEILLAMCE  -  REPORTED  CASES:   June  16  -  July  13,  1983 


MALES 

MEW  CASES 

TOTAL  CASES 

JTOTAL  MALE 

CASES 

Kaposi's  sarcoma  (KS) 

38 

299 

(37) 

Pneuaocystis  carlnil 

pneuiaooia  (PCP) 

34 

374 

(46) 

wlchcut  KS 

Other  opportunistic 

Infections  (001)  without 

PCP  or  KS 

8 

133 

(17) 

TOTAL  MALES: 

80 

806 

FEMALES          NEW  CASES 

TOTAL  CASES 

t_ 

TOTAL  FEMALE  CASES 

KS 

0 

4 

(6) 

PCP 

3 

44 

(62) 

001 

5 

23 

'.32) 

TOTAL  FEMALES 

6 

71 

TOTAL  CASES 

88 

:   July  16, 

877 
1983 

CDC  National  Surveillance 

Total  Dofflestlc  Cases 

:   19C2 

Total  Foreign  Cases 

:    121 

TRENDS: 

Airs  CASES 

Bi  MONTH,  NEW 

YORK 

CITY 

Month 

Number  Diagnosed 

Number  Reported 

1982              As 

of  7.13 

As  of  6.: 

15 

July 

33 

(31) 

36 

August 

41 

(39) 

42 

SepteTBber 

45 

(45) 

38 

October 

51 

(51) 

30 

November 

44 

(43) 

47 

December 

39 

(37) 

39 

average  no./ao. 

42 

37 

1983 

January 

62 

(61) 

55 

February 

43 

(42) 

68 

March 

51 

(47) 

65 

April 

^■^ 

(40) 

49 

May 

46 

(28) 

58 

June 

48 

(9) 

81 

July 

5 

20 

average  no. /mo. 

50 

63 

(Jan-  -  June) 

7-13-83 

264 


OTHET?  OPPORTUNISTIC  INTXCTIONS  IN  CASES  WITHOUT  KS  OR  PC7 


NEW 

YORK  CITY 

No, 

m 

Candida  (esophageal) 

41 

26 

Crptococcus  (CNS) 

28 

18 

Toxoplasmosis  (CNS) 

27 

16 

Cytomegalovirus 

17 

11 

Herpes  simplex  (lesion 

1  mo.) 

15 

10 

Atypical  mycobacterlua 

11 

6 

Cryp'o  sporldlum 

9 

6 

Mycobacterliim  tuberculosis* 

5 

3 

Lymphoma  (CNS) 

1 

1 

Progressive  multifocal 

encephalopathy 

4 

3 

*  These  individuals  subsequently  had  a  second,  more  serious 
opportunistic  infection  diagnosed. 


AIDS  CASE  MORTALITY  BY 

HALF  YEAR  OF  DIAGNOSIS,  NEW 

YORK  CITY 

No. 
Diagnosed 

No. 

Dead 

(2) 

Cumulative 
No.  Dead 

(2) 

1st  half 
2nd  half 

1978 
1978 

0 
2 

0 
0 

(0) 
(0) 

0 
0 

(0) 
(0) 

1st  half 
2nd  half 

1979 
1979 

1 
5 

1 
4 

(100) 
(80) 

1 

5 

(33) 
(63) 

1st  half 
2nd  half 

1980 
1980 

9 

IS 

6 

14 

(67) 
(93) 

11 
25 

(65) 
(78) 

1st  half 
2nd  half 

1981 
1981 

41 
93 

30 
67 

(73) 
(72) 

55 

122 

(75) 
(75) 

1st  half 
2nd  half 

1982 
1982 

146 
253 

60 
95 

(41) 
(38) 

182 
277 

(58) 
(49) 

1st  half 

1983 

301 

74 

(25) 

351 

(41) 

7-16-83 


265 


HALF  YIAK 

OF 

SYMPTOM 

ONSET,  NEW  YORK  CITY 

Number  of  cases 

Year 

of  1978 
of  1978 

H 

omo: 

sexual/bisexual    IV  User 

Haitian 

0 
0 

Other 

1st  half 
2nd  half 

8 
0 

0 
0 

0 
0 

1st  half 
2nd  half 

of  1979 
of  1979 

4 
8 

1 

2 

1 
0 

1 
1 

1st  half 
2nd  half 

of  1980 
of  1980 

15 
32 

1 
4 

0 

1 

0 

I 

1st  half 
2nd  half 

of  1981 
of  1981 

51 
86 

10 
17 

2 
2 

0 
3 

1st  half 
2nd  half 

of  1982 
of  1982 

119 
143 

45 
64 

6 
9 

13 
7 

1st  half 

of  1983 

92 

37 

10 

17 

AIDS  CASES 

BY  MUTUAiLY  EXCLUSIVE 

RIS".  GRCDP,  NEW  YORK 

aTY 

Risk  Group 
Homosexual/ bisexual  males 
IV  drug  user 

Number     Z  Total 

Cases 

611           (70) 

(no  hi 
Hemophlll 
Other  or 

story  of 

ac 

unknown 

homosexuality) 

190          (22) 

0           (0) 

76           (3) 

Total  cases: 

877 

AIDS  CASES  WITHOirr 

APPARENT  RISK  CP.OUP  NEW  YORK  CITY 

Haitian  (no  history  of  hoaosexualicy 

or  IV  drug  use)  31 

Unknown  -  died  prior  to  interview  14 

Possible  background  Kaposi's  sarcoma  2 

Possible  transfusion  associated  3 

Sextial  partner  of  an  "at  risk"  group  12 
Others: 

Interviewed  -  no  risk  factors  established  9 

Open  cases  -  under  Investigation  5 


Total 


76 

7-13-83 


266 


AIDS  CASES  BY  RESIDENCE,  WEW  YORK  CITY 


Number 

(2? 

Manhattan 

421 

(48) 

Brooklyn 

117 

(13) 

Bronx 

91 

(10) 

Queens 

68 

(8) 

Richmond 

5 

(1) 

NYC-boro  unknown 

107 

(12) 

New  York  State 

15 

(2) 

New  Jersey 

24 

(2) 

Other 

25 

(3) 

Unknown 

4 

(1) 

AIDS  CASES, 

AVERAGE  AGE  BY  MUTUALLY  EXLUSIVE 

RISK  GROU? 

NEW  YORX 

CITY 

Risk  Group 

1980   } 

Year  of  Primary 

'  Diagnosis 

1981 

1982 

1983 

Homosexual /bisexual 

n-19 

n-108 

n-275 

n-199 

38 

37.7 

37.3 

38.3 

IV  user 

n-6 

n-17 

n-94 

n-"/0 

36.8 

34.8 

32.3 

34.5 

Haitian 

n-1 

n-4 

n-1 2 

13 

31 

33 

29.8 

32.2 

Other 

a-5 

n-16 

n-24 

39.4 

36.7 

35.2 

7-16-83 


267 


TEE  CITY  OF  MEW  YORK      OFTICE  OF  THE  MAYOR      EOUARD  I.  KOCH 


tal:  566-5090  143-S3 

For  Ralsase: 
Monday,  June  6,  198  3 

STATSMENT  3Y  MAYOR  SDWAiO  : .  KQCK 
I  HAVE  JUST   CONCLUDED  A  MEETING  WITH  A  NUMBER  OF  MY 
COMMISSIONERS  -.TiOSE  DEPARTMENTS  DE.\L  WITH  THE  GENERAL  PUBLIC 
.iU?D  OCCASIONALLY  WITH  PATIENTS  SUFFERING  FROM  ACQUIRED 
IMMUNE  DEFICIENCY  S'fNDROME  (AIDS).  AT  THIS  MEETING,  DR. 
WILLIAM  FOEGE,  DIRECTOR  OF  THE  UNITED  STATES  PUBLIC  HEALTH 
SERVICE'S  CENTER  FOR  DISEASE  CONTROL  IN  ATLANTA,  GEORGIA. 
AND  DR.  DAVID  SSNCER,  COMMISSIONER  OF  THE  CITY'S  DEPARTMENT 
OF  HEALTH,  REVIEWED  FOR  THE!-!  AND  FOR  ME  THE  CLRRF.-JT 
SITUATION  ON  AIDS. 

THERE  ARE  A  NIWBER  OF  RUMOi^S  ASSOCIATED  %..n  AIDS.  DR. 
FOEGE  AilD  DR.  SENCER  ARE  ciE.RE  TO  HELP  DISPEL  SOME  OF  THE 
RL'MCRS,  AND  TO  KEEP  US  ALL  UP  TO  LATE  ON  THE  FACTS. 

--iRE  ARE  SOME  OF  THOSE  FACTS: 

—  "^'2  C.iSES  OF  AIDS  HAVE  BEEN  REPORTED  IN  NE;>'  YORK  CITY 
SINCE  THE  BEGINNING  OF  THE  OUTBREAK  IN  1973. 

—  ALMOST  ALL  OF  THE  NEW  YORK  CITY  CASES  THAT  CAN  BE 
TRACED  dAVE  BEEN  RELATED  TO  THE  PREVIOUSLY  DESCRIBED  RISK 
GROUPS  —  MAINLY  SEXUALLY  ACTIVE  HOMOSEXUAL  MALES  OR 
INTR.i.^'ENOUS  DRUG  ABUSERS.   THESE  ACCOUNT  50?.  94.  PERCE!-^  ■IF 
THE  REPORTED  CASES. 

—  ABOUT   3.5  PERCENT  OF  THE  C.a.SES  HAVE  OCCURRED  ?N 
RECENT  ARRIVALS  ?kOM  HAITI. 

—  ABOUT  2  PE.RC-.NT  DIED  BEFORE  THEY  COULL  3E 
INTERVIEWED. 


268 


THRSZ  CASES  MAY  3E  RELATED  TO  BLOOD  PRODUCTS,  AND 

ONLY  4  AT  THIS  TIME  CANNOT  32  ASSIGNED  TO  ONE  OF  THE  RISK 
GROUPS. 

A  SMALL  GROUP  OF  VERY  YOU^NG  CHILDREN  HAVE  SOME  OF  THE 
CONDITIONS  THAT  ARE  ASSOCIATED  WITH  AIDS,  BUT    THE 
PEDIATRICIANS  OF  THE  CaMMUNITY  ARE  NOT  SURE  THAT  THIS  IS  THE 
SAME  DISEASE. 

THERE  ARE  ANY  NUMBER  CS    RUMORS  A30UT  THE  SPREAD  OF  AIDS. 
THESE  INCLUDE  ALLEGATIONS  THAT  THE  DISEASE  IS  SPREAD  THROUGH 
FOOD,  THROUGH  THE  AIR,  OR  MERELY  BY  TOUCHING  AN  AIDS  VICTIM. 
THESE  RUMORS  AR£  NOT  TRUE.  " 

AS  FAR  AS  WE  CAN  TELL.  AIDS  IS  SPREAD  THROUGH  SEXUAL 
CONTACT,  THROUGH  BLOOD  PRODUCTS,  OR  THROUGH  CONTAMINATED 
HYPODERMIC  NEEDLES. 

KUMORS  ABOUT  AIDS  HAVE  PROMPTED  IN  MANY  PEOPLE  AN 
UNREASOWING  AND  'JNREASONABLE  FEAR  OF  CONTRAC^-'nG  THIS 
DISEASE.  THIS  FEAR  IS  UNFOUNDED. 

LET  ME  DETAIL  FOR  YOU  SOME  OF  THE  THINGS  THIS  CITY  IS 
DOING,  BOTH  FOR  AIDS  PATIENTS  A:^D  THEIR  FAMILIES,  AND  TO 
COUNTERACT  THESE  RUMORS. 

—  Vj-E  have  established  an  OFFICE  OF  GAY  ."^nD  LESBIAN 
HE.\LTH  CONCERNS,  AND  HAVE  CONTRACTED  WITH  TH.E  GAY  MSN'S 
HEALTH  CRISIS  FOR  SOCIAL  SERVICES  .^^^D  TRAINING  IN  HOSPITALS; 

—  WE  ARE  CONVENING  ALL  LOCAL  AIDS  RESEARCHERS  ON  A 
MONTHLY  BASIS,  HAVE  ESTABLISHED  A  REPORTING  SYSTEM  WITH  CITY 
HOSPITALS  TO  KEEP  TRACK  '^='  THE  SPREAD  OF  Td£   DISEASE,  AND 
ARE  WORKING  WITH  THE  NEW  YORK  BLOOD  CEirPER  AND  THE  CENTERS 
FOR  DISE.ASw  CONTROL  TO  HELP  FIND  T.4E  CAUSE  OF  AIDS,- 


269 


—  WE  AJtE  DIAGNOSING  OR  TRSATING  MORE  THAN  ONE-THIRD  OF 
THE  MEW  YORK  AIDS  CASES  IN  rJEALTH  AiTD  HOSPITALS  CORPORATION 
FACILITIES,  AND  ARE  INVESTIGATING  '-yHETHE:^  OR  NOT  A  HEALTH 
FACILITY  DESIGNED  FOR  AIDS  PATIENTS  AND  THEIil  F.VilLIES  CAN 
BE  ESTABLISHED  IN  A  CITY -OWNED  BUILDING  IN  GRESI^WICK 
VILLAGE  r 

—  WE  AilS  ENCOURAGING  CONGRESS  TO' APPROPRIATE  MORE  FUNDS 
FOR  AIDS  RESEARCH; 

—  THE  HUMAN  RESOURCES  AUMINISTRATIOS  IS  PREPARING  TO 
ISSUE  A  REQUEST  FOR  PROPOSALS  FOR  ORGANIZATIONS  THAT  WISH, 
UNDER  CONTRACT  WITH  THE  CITY,  TO  PROVIDE  HOME  CARE  FOR  AIDS 
PATIENTS ; 

—  A  COMMITTEE  DRAWN  FROM  CITY  AGENCIES  THAT  DEAL  WITH 
AIDS  CASES  NOW  MEETS  TWICE  A  MONTH,  AND  OFFICIALS  FROM  THE 
DSPARTMEiJT  OF  HEALTH  ARE  MEETING  WITH  UNION  REPRESENTATIVES 
TO  HELP  ALLAY  THE  FEARS  OF  CITY  WORKERS  WHO  DEAL  WITH  AIDS 
PATIENTS ; 

—  WE  WILL  3E  SUPPLEMENTING  OUR  TELEPHONE  HOTLXNES  TO 
INCLUDE  INFORMATION  ON  AIDS  FOR  THE  GENERAL  PUBLIC. 

WE  ARE  HERE  TODAY  TO  HELP  ALLAY  PUBLIC  FEARS  ABOUT  THIS 
0 IS EASE.  3UT  I  DO  NOT  WANT  TO  MAINTAIN  THAT  THERE  WILL  NOT 
3E  MORE  AIDS  CASES  IN  THIS  CITY. 

WE  CAN,  UNFORTUNATELY,   EXPECT  MORE  OCCURRENCES  IN  A 
CITY  OF  THIS  SIZE.   A  CASE  MAY  WELL  DEVELOP  IN  A 
SCHOOLTEACHER,  A  SOCI.AL  V.-ORKER  OR  A  HEALTH  CARE  WORKER, 
SOME  OF  THESE  INDIVIDUALS  MAY  HAVE  A  RISK  FACTOR  THAT  THE"! 
DO  MOT  WANT 


?'/ 


26-097  0—83 18 


270 

MAOE  PUBLIC.  BUT  XS  LONG  AS  WE  KEEP  IN  MIND  HOW  AIDS  IS 
SPREAD,  '/^  CAN  BE  SURE  THAT  THEIR  CCCJPATION  rAS  iJOT  PUT 
THEM  OR  OTHER  PEOPLE  AT  RISK. 

I,  AND  TH£  MEMBERS  OF  THIS  ADMINISTRATION,  ARE  PLEDGED 
TO  KEEP  YOU  INFORMED  ABOUT. THIS  SITUATION.   SCIENTISTS  MAY 
MAKE  IMPRECISE  STATEMENTS,  HEADLINE  WRITERS  MAY  DRAW  CiT 
THESE  IMPRSCISIONS. 

BUT  IF  I,  OR  MEMBERS  OF  THIS  ADMINISTRATION,  THOUGHT 
THAT  THE  RISKS  WERS  DIFFERENT  FROM  THOSE  I  HAVE  JUST 
DESCRIBED,  I  WOULD  SAY  SO.   AND  IF  THE  SITUATION  CHANGES,  WE 
WILL  TELL  YOU  SO. 

Mr.  Weiss.  Dr.  Silverman. 

STATEMENT  OF  MERVYN  F.  SILVERMAN,  M.D.,  M.P.H.,  DIRECTOR 
OF  HEALTH,  SAN  FRANCISCO,  CALIF. 

Dr.  Silverman.  I  am  pleased  to  have  the  opportunity  to  speak 
before  the  subcommittee  both  as  the  director  of  health  of  San  Fran- 
cisco, and  as  the  vice  president  of  the  U.S.  Conference  of  Local 
Health  Officers,  on  what  is  considered  to  be  the  number  one  public 
health  problem  facing  this  country  today. 

Although  the  total  numbers  of  those  afflicted  do  not  approach 
other  health  problems  such  as  heart  disease,  cancer  and  stroke,  the 
mortality  rate  of  AIDS  certainly  places  it  at  the  top  of  the  list.  I 
am  sure  that  you  are  aware  that  the  care  of  these  patients  has 
become  a  local  public  responsibility.  San  Francisco  now  has  the 
second  highest  number  of  AIDS  cases  in  the  country — 239  as  of 
July  18,  with  74  deaths.  For  a  city  and  county  of  700,000  popula- 
tion, this  makes  us  No.  1  on  a  per  capita  basis. 

To  deal  with  this  problem,  it  is  obvious  that  San  Francisco  did 
not  earn  its  title  "The  City  That  Knows  How"  without  good  reason. 
Several  years  ago,  before  AIDS  had  become  a  household  word,  the 
mayor  and  the  department  of  health  were  already  at  work  trying 
to  create  a  continuum  of  services  to  meet  the  needs  not  only  of  the 
victims  of  this  horrible  disease,  but  their  partners,  friends,  families 
and  the  public  at  large. 

The  involvement  of  the  department  has  followed  four  distinct 
program  themes:  epidemiology,  clinical  diagnosis  and  treatment, 
education  and  training,  and  coordination  of  activities.  None  of 
these  program  activities  could  have  been  possible  without  the  local 
provision  of  funds  to  support  them. 

Beginning  with  epidemiology,  the  department  in  July  of  1981  es- 
tablished a  reporting  system  and  case  registry  for  AIDS  cases  diag- 
nosed in  San  Francisco  and  the  surrounding  bay  area  counties. 
This  was  done  in  collaboration  with  CDC  and  the  California  State 
Department  of  Health  Services.  We  then  established  liaison  with 


271 

local  health  and  medical  agencies  involved  with  AIDS  epidemiol- 
ogy, treatment,  and  research.  This  included  such  things  as  confer- 
ring with  local  treatment  facilities  about  therapy  and  research  ef- 
forts. 

A  third  activity  involved  investigating  and  interviewing  AIDS 
cases.  We  worked  with  the  University  of  California  in  San  Francis- 
co and  our  San  Francisco  General  Hospital  in  their  cross-sectional 
studies,  investigating  blood  transfusion-associated  cases  and  the 
DCD  hepatitis  cohort  study  of  AIDS  cases.  Six  months  ago,  I  re- 
quested that  all  cases  of  AIDS  seen  by  private  physicians  be  report- 
ed to  my  health  department.  It  is  now  a  reportable  illness  in  Cali- 
fornia. 

The  second  major  program  theme  is  clinical  diagnosis  and  treat- 
ment. In  October  1982,  a  multidisciplinary  AIDS  clinic  was  begun 
at  San  Francisco  General  Hospital.  This  clinic  provides  AIDS 
screening,  diagnosis,  treatment  and  followup  as  well  as  education 
and  counseling  and,  because  of  the  increased  patient  load,  it  is  now 
operating  on  an  expanded  schedule.  Two  of  the  city's  district 
health  centers  and  the  city's  clinic  for  sexually  transmitted  dis- 
eases also  provide  AIDS  screening  to  patients  in  order  to  relieve 
some  of  the  burden  on  our  hospital. 

About  a  week  ago,  a  medical  special  care  in-patient  unit  opened 
at  San  Francisco  General  Hospital.  This  is  an  11-bed  unit,  primar- 
ily for  AIDS  patients.  I  want  to  stress  it  is  for  the  protection  of  the 
AIDS  patients — not  for  the  purpose  of  isolating  them.  We  feel  they 
have  more  to  risk  from  us  than  we  have  from  them.  And  we  also 
want  to  try  and  provide  a  complete  care,  not  only  the  medical  as- 
pects but  the  psychiatric  aspects,  the  social  aspects,  and  provide  a 
total  treatment  program  so  that  all  their  needs  are  met. 

An  important  aspect  of  AIDS  therapy  is  the  psychosocial  compo- 
nent. Certain  city-funded  nonprofit  community  agencies,  as  well  as 
our  community  mental  health  centers,  and  staff  at  San  Francisco 
General  Hospital  provide  professional  and  lay  counseling  to  pa- 
tients, their  loved  ones  and  to  the  worried,  well — those  individuals 
at  risk  of  contracting  AIDS  who  are  extremely  anxious  about  it. 

The  third  program  area  is  education  and  training,  which  are  in- 
tegral parts  of  all  of  our  AIDS  activities.  The  focal  points  for  these 
activities  have  been  the  department's  Lesbian/Gay  Coordinating 
Committee,  staff  from  the  University  of  California  and  San  Fran- 
cisco General  Hospital,  and  two  city-funded  nonprofit  agencies. 
Since  May  of  1982,  this  committee  has  sponsored  over  30  training 
sessions  for  a  variety  of  groups,  including  health  workers,  police 
personnel,  social  service  employees,  the  general  public  and  mem- 
bers of  the  gay  community. 

Individuals  within  and  outside  the  department  have  participated 
in  these  sessions  and  have  appeared  on  local  radio  and  television. 
Information  has  also  been  developed  and  distributed  about  AIDS  to 
the  professional  and  lay  community.  In  May,  we  sponsored  a 
citywide  symposium  on  AIDS.  Over  500  people  attended  a  Sunday 
morning  meeting  to  learn  more  about  this  public  health  problem. 
This  month,  a  major  symposium  is  planned  for  health  care  work- 
ers. 

The  last  program  area  deals  with  coordination  of  activities.  In 
July  1982,  a  community  coordinating  committee  was  established 


272 

with  the  purpose  of  bringing  together  people  representing  all  as- 
pects of  the  epidemic.  This  included  clinicians,  researchers,  health 
educators,  patients,  gay  activists,  and  many  others.  Information  is 
shared,  gaps  identified  in  the  system,  and  recommendations  are 
made  to  the  city  and  the  department.  This  group  has  developed  a 
community  aids  resource  directory  and  has  made  recommendations 
for  new  services. 

In  order  to  keep  abreast  of  current  treatment  and  research,  I 
have  appointed  a  medical  advisory  committee,  composed  of  clini- 
cians and  researchers,  who  meet  with  me  on  a  regular  basis  to  dis- 
cuss and  recommend  policy  guidelines  relative  to  AIDS.  This  com- 
mittee has  been  instrumental  in  reviewing  the  infection  control 
guidelines  prepared  by  the  university  and  my  office. 

After  many  weeks  of  work,  through  consultation  with  CDC  and 
representatives  of  the  academic,  research  and  general  medical  com- 
munity, we  have  put  together  what  we  have  purposely  called  guide- 
lines, because  each  medical  facility  may  have  specific  situations 
which  warrant  greater  or  lesser  emphasis  on  the  various  aspects 
contained  within  this  document. 

In  June,  I  met  with  representatives  of  the  many  different  busi- 
nesses serving  the  gay  male  population  in  San  Francisco.  As  a 
result  of  that  meeting,  we  have  complete  support  for  the  posting  of 
signs  and  distribution  of  flyers  which  indicate  the  measures  that 
can  be  taken  to  reduce  the  spread  of  the  disease. 

With  the  exception  of  a  portion  of  our  epidemiologic  activities, 
the  city  has  financed  all  of  the  AIDS  services  I  have  described.  Ad- 
ditionally, the  city  has  funded  nonprofit  community  agencies  to  ad- 
dress specific  components  of  the  AIDS  problem.  For  example,  the 
AIDS  and  Kaposi's  Sarcoma  Foundation  was  funded  to  establish  an 
educational  clearinghouse  and  to  produce  materials  focusing  on  the 
at-risk  population.  The  Shanti  project,  which  is  an  agency  serving 
the  emotional  needs  of  terminally  ill  patients,  their  loved  ones,  and 
friends,  was  funded  to  provide  counseling  and  to  set  up  residences 
for  displaced  AIDS  patients. 

Last  month,  the  mayor  and  the  board  of  supervisors  approved 
spending  an  additional  $2  million  from  within  our  budget,  which 
doubles  the  money  presently  being  spent  annually  by  the  Depart- 
ment of  Health  for  AIDS  services.  The  rapidly  increasing  incidence 
of  AIDS,  along  with  the  secondary  problems  of  anxiety,  misinfor- 
mation, displacement  of  patients  and  difficulties  in  treatment,  \yas 
the  motivation  behind  this  authorization — this  money  now  totaling 
$4  million,  which  will  increase  the  services  in  the  areas  that  I  have 
mentioned. 

I  have  also  hired  an  AIDS  coordinator  to  try  and  coordinate  all 
of  the  activities  that  are  taking  place,  so  that  we  have  a  better 
handle  on  the  problem,  both  the  social,  psychological,  and  medical 
issues. 

Obviously,  San  Francisco  and  other  impacted  communities 
cannot  continue  to  meet  these  needs  without  Federal  support.  Fed- 
eral funds  are  needed  to  supplement  these  costs  as  well  as  the  re- 
search component.  Education,  counseling,  screening,  outpatient  and 
inpatient  and  hospice  services  as  well  as  residential  facilities  are 
costly  at  a  time  when  local  governments  are  least  able  to  meet  in- 
creased demands.  One  form  of  relief  would  be  the  immediate  avail- 


273 

ability  of  medicare  coverage  for  AIDS  patients  rather  than  the  24- 
month  waiting  period.  Also,  SSI  should  be  granted  as  presumptive 
eligibility  on  diagnosis  rather  than  the  60-  to  90-day  wait  that  pres- 
ently exists. 

AIDS  patients  who  apply  for  SSI  regularly  must  wait  several 
weeks  or  months  for  certification.  This  is  because  rules  require  the 
submission  of  medical  records  to  a  separate  agency  in  another  city. 
This  is  not  the  case  in  1 1  specific  categories  of  inpatients  where  the 
Social  Security  district  office  may  make  a  determination  of  pre- 
sumptive disability  on  the  spot.  A  diagnosis  of  AIDS  should  be 
added  to  this  list  to  facilitate  the  immediate  granting  of  SSI.  The 
relevant  social  security  regulations  are  located  in  title  XX  of  the 
code,  Federal  regulation  416.931  to  416.934. 

An  alternative  approach  that  may  be  quicker  would  be  to  get 
social  security  to  interpret  rather  than  change  social  security  regu- 
lation 416.933  to  include  AIDS  diagnosis.  416.933  states  that,  and  I 
quote: 

We  may  make  a  finding  of  presumptive  disability  or  presumptive  blindness  if  the 
evidence  available  at  the  time  of  the  presumptive  disability  or  presumptive  blind- 
ness decision  reflects  a  high  degree  of  probability  that  you  are  disabled  or  blind. 

It  is  interesting  to  note  that  no  disease  has  ever  been  eradicated 
through  treatment — only  through  prevention.  That  is  why  it  is  im- 
perative to  have  sufficient  funding  to  establish  the  cause,  provide 
the  necessary  treatment,  and,  most  importantly,  put  into  effect  the 
preventive  measures  which  will  eliminate  AIDS  from  its  dubious 
distinction  as  the  No.  1  public  health  problem  facing  America 
today. 

Thomas  Adams  summed  it  up  very  well  over  300  years  ago  when 
he  said:  "Prevention  is  so  much  better  than  healing  because  it 
saves  the  labor  of  being  sick." 

Thank  you. 

Mr.  Weiss.  Thank  you  very  much.  Dr.  Silverman. 

Mr.  Matek. 

STATEMENT  OF  STANLEY  J.  MATEK,  IMMEDIATE  PAST 
PRESIDENT,  AMERICAN  PUBLIC  HEALTH  ASSOCIATION 

Mr.  Matek.  Thank  you,  Mr.  Chairman,  members  of  the  commit- 
tee. 

You  have  our  written  statement,  so  I  will  try  to  just  highlight 
the  key  points  instead  of  reading  it. 

Mr.  Weiss.  Without  objection,  your  entire  statement  will  be  en- 
tered into  the  record. 

Mr.  Matek.  Thank  you,  Mr.  Chairman. 

In  the  light  of  your  opening  comments  about  your  interest  in 
hearing  from  the  administration,  I  would  like  to  emphasize  one 
point  we  take  very  seriously:  Dr.  Brandt  is  a  professional  seriously 
committed  to  these  issues.  But  we  must  recognize  that  he  takes  his 
orders  from  above.  We  don't  think  that  the  Centers  for  Disease 
Control  or  the  National  Institutes  of  Health  or  Dr.  Brandt  ought  to 
be  the  focus  of  criticism  when,  in  fact,  the  decisions  on  what  will  or 
will  not  be  done  in  the  allocation  of  moneys  and  in  service  and  re- 
search programs  are  being  made  by  the  Office  of  Management  and 
Budget  and  by  the  White  House.  We  wish  to  emphasize  that  in 


274 

looking  to  ultimate  responsibility  and  to  decisionmaking  power,  we 
must  all  look  there.  . 

APHA  recognizes  that  although  CDC  and  NIH  are  domg  as  much 
as  they  can,  they  are  not  doing  enough.  They  are  not  doing  enough 
because  they  don't  have  the  resources,  because  they  are  under- 
staffed. We  look  to  Congress  to  remedy  that  situation. 

We  would  like  to  see  leadership  from  the  White  House.  It  has  not 
yet  been  forthcoming. 

The  priority  now,  as  we  see  it,  in  this  Nation  relative  to  AIDS  is 
for  the  prompt  development  of  a  comprehensive  research  surveil- 
lance and  monitoring  program.  If  we  don't  have  that — and  if  we 
don't  have  it  quickly— any  money,  any  time  or  any  talent  put  into 
the  AIDS  effort  is  going  to  be  in  large  part  wasted,  because  without 
a  comprehensive  plan,  we  are  merely  shooting  in  the  dark  with  sci- 
entific scatter  guns. 

We,  therefore,  ask — and  we  ask  urgently — that  within  the  next 
45  days  Assistant  Secretary  Brandt  convene  a  meeting  of  national 
experts  in  epidemiology,  immunology,  medical  research,  and  other 
appropriate  disciplines  for  the  purpose  of  developing  an  AIDS  re- 
search master  plan,  from  which  will  follow  a  realistic  budget  and  a 
priority  list. 

We  then  ask  that  that  research  plan  be  used  to  guide  AIDS  grant 
awards  in  the  National  Institutes  of  Health,  and  that  the  adminis- 
tration refrain  from  counting  among  its  AIDS  activities  those  pre- 
viously funded  projects  which  are  only  tangentially  related  to  AIDS 
and  which  are  not  part  of  that  master  plan.  We  need,  first  of  all,  to 
have  a  realistic  fix  on  what  is  or  is  not  being  done  in  a  focused  and 
organized  way.  We  don't  have  that  yet. 

Then  we  think  that  Dr.  Brandt  needs  to  appoint  a  standing 
expert  advisory  panel  which  includes  people  from  outside  NIH  and 
the  Department,  as  well  as  from  inside.  That  is  not  just  a  sunshine 
provision;  it  is  intended  to  give  the  programing,  the  planning,  and 
the  analysis  an  enriched  dimension. 

We  also  respectfully  ask  that  Dr.  Brandt  assign  for  prompt  im- 
plementation the  interprofessional  AIDS  update  report  which  has 
been  talked  about  now  for  several  months,  but  which  we  have  not  yet 
seen. 

And,  finally,  we  would  like  to  make  some  brief  points  relative  to 
programing.  First,  we  recognize  that  CDC  cannot  do  everything  by 
itself.  The  job  is  getting  too  big  and  the  problems  are  too  spread 
out.  Adequate  surveillance  and  monitoring  cannot  be  done  only 
from  the  center.  We  would  therefore  like  to  see  the  efforts  relative 
to  AIDS  surveillance,  monitoring,  and  applied  research  decentral- 
ized, at  least  to  the  point  that  those  cities  where  the  major  AIDS 
case  clusters  occur  become  capable  of  doing  surveillance  and  moni- 
toring themselves.  And  we  recognize  that  it  is  going  to  take  some 
Federal  money.  We  would  like  Dr.  Brandt  to  order  such  a  decen- 
tralization and  to  plan  for  its  implementation  as  soon  as  possible. 

Second,  we  believe  it  is  necessary  for  AIDS  to  be  declared  a  re- 
portable disease  nationwide.  However,  we  recognize  the  problems 
that  occur  relative  to  the  distorting  of  incidence  data  when  report- 
ing programs  are  instituted;  therefore,  we  ask  that  a  definitive 
plan  for  protecting  the  confidentiality  of  the  caseload  and  the  pri- 
vacy of  the  patients  be  created. 


275 

We  understand  that  that  plan  is  now  being  developed  in  conjunc- 
tion with  Dr.  Sencer  in  New  York  City,  and  CDC.  We  would  like  to 
add  one  item  to  that  proposal,  namely  that  Zip  codes  be  used  in  the 
identifying  information,  because  without  Zip  codes  it  will  not  be  as 
easy  to  do  proper  applied  research  or  good  treatment  planning. 

Third,  we  would  like  to  urge  that  funding  be  provided  for  treat- 
ment and  prevention — as  we  understand,  Mr.  Chairman,  it  is  in 
legislation  you  are  introducing.  But  we  would  like  to  note  that  be- 
cause our  hospital  system  is  now  such  a  high-cost  system,  money 
for  treatment  and  prevention  usually  gets  used  exclusively  for 
treatment.  Our  hospital  system  tends  to  consume  whatever  is  avail- 
able because  we  have  a  high  technology  orientation  to  treatment. 

If  we  are  serious  about  having  money  for  prevention,  we  are 
going  to  have  to  segregate  it.  And  we  call  that  to  your  attention  so 
it  can  be  done — if  not  in  legislation,  then  in  regulation. 

As  Dr.  Silverman  pointed  out,  prevention  is  what  really  works. 
Prevention  is  what  protects  the  population.  But  unless  we  budget 
specifically,  we  tend  to  lose  that  money. 

We  would  plead  also  with  the  White  House,  with  0MB,  with  Sec- 
retary Heckler,  and  everyone  involved  in  dealing  with  AIDS  to  ac- 
knowledge the  epidemiological  urgency  of  this  problem.  We  know 
there  are  problems.  We  know  NIH  moves  slowly.  We  recognize  that 
CDC  does  not  have  a  practice  of  decentralized  approach  to  prob- 
lems. We  recognize  that  Congress  itself  likes  to  fund  things  categor- 
ically. And  we  know  that  these  are  all  system  problems.  But  the 
AIDS  issue  should  not  be  the  issue  on  which  we  seek  to  leverage 
reform  of  our  systems — not  now;  not  with  this  problem. 

Finally,  we  urge  that  instead  of  belaboring  past  failures,  we  all 
look  to  the  next  steps  toward  solution.  It  doesn't  so  much  matter 
what  our  mistakes  were  yesterday  as  what  our  solutions  are  today, 
and  what  our  actions  will  be  tomorrow. 

We  are  grateful  to  Congress  because  that  is  whence  the  leader- 
ship for  change  has  come  relative  to  AIDS.  We  urgently  hope  that 
you  will  continue  that  initiative. 

The  American  Public  Health  Association  volunteers  to  do  any- 
thing you  or  the  administration  or  CDC  or  NIH  might  think  that 
we  can  do  to  be  of  help. 

We  thank  you  for  this  opportunity  to  talk  with  you. 

[The  prepared  statement  of  Mr.  Matek  follows:] 


276 


Testimony  Of  STANLEY  J.  MATEK, 

Immediate  Past  President, 

AMERICAN  PUBLIC  HEALTH  ASSOCIATION 

before  the 

Intergovernmental  Relations  and  Human  Resources  Subcommittee 

of  the 
Committee  on  Governmental  Operations 


Mr.  Chairman,  Honorable  Members,  Ladies  and  Gentlemen: 

I  am  here  this  morning  on  behalf  of  the  American  Public  Health  Association, 
the  world's  largest  association  of  public  health  professionals.   We  are 
particularly  grateful  to  have  this  opportunity  to  comment  on  current  efforts 
to  deal  with  Acquired  Immune  Deficiency  Syndrome,  because  the  morphology  of 
this  illness  qualifies  it  beyond  any  question  as  the  most  serious  public 
health  disease  issue  in  decades.   On  the  basis  of  incubation  period  alone, 
AIDS  is  an  epidemiological  nightmare,  the  horrors  of  v;hich  are  only  beginning 
to  unfold.   The  extent  of  exposure,  the  scope  of  susceptibility,  and  the  real 
rate  of  incidence  are  all  unknown.   The  agent  is  only  hypothesized,  and  the 
mode  of  transmission  is  but  vaguely  suspected.   There  is  no  known  form  of 
treatment,  the  disease  career  is  protracted,  and  the  associated  expenses  are 
phenomenal.   The  situation  demands  the  immediate  use  of  the  full 
armamentarium  of  public  health  techniques.   Unfortunately,  our  response 
thus  far  fails  to  measure  up  to  that  demand. 

It  cannot  accurately  be  said  that  the  Public  Health  Service  or  the 
National  Institutes  of  Health  have  been  derelict.   They  have  done  what  they 
could  with  the  resources  available  to  them,  going  even  so  far  at  CDC  as  to 
siphon  funds  quietly  away  from  other  necessary  programs.   But  it  must  be 
acknowledged  that  AIDS-related  efforts  in  all  quarters  of  our  system  thus 
far  have  been  ad  hoc,  largely  expedient,  and  gravely  incomplete. 

These  inadequacies  stem  neither  from  a  lack  of  ability  nor  a  lack  of  good 
will  within  our  pioblic  systems,  but  clearly  and  almost  completely  from  a  lack 
of  resources.   It  has  been  disappointing  to  hear  recent  charges  of  unresponsiveness 
on  the  part  of  CDC  and  NIH  relative  to  their  AIDS-related  activities.   But 
such  appearances  can  be  understood  easily  enough  by  reference  to  the  fact  that 
these  agencies  are  underfunded,  understaffed  and  overworked.   It  is  clear, 


277 


moreover,  that  the  Administration's  marching  order  to  these  program  directors 
is  unequivocal:   "Don't  ask  for  any  money;  make  us  look  as  good  as  you  can 
with  what  you've  got." 

It  is  obvious  that  additional  funds  must  be  made  available;  AIDS  cannot 
be  addressed  on  the  basis  of  existing  budgets.   The  50,000  members  of  APHA 
are  unanimously  grateful  to  you,  Mr.  Chairman,  to  Congressman  Waxman  and 
to  the  others  in  Congress,  on  your  staffs  and  elsewhere  who  have  contributed 
thus  far  to  the  procurement  of  additional  monies  for  AIDS  research  and  treat- 
ment.  We  ask  fervently  for  persistence  in  these  efforts. 

But  we  must  caution  that  even  if  additional  funds  are  made  available, 
that  will  not  in  itself  enable  us  to  cope  competently  with  the  AIDS  problem. 
Thus  far  our  quests  both  for  cause  and  cure  represent  little  more  than  mere 
shooting  in  the  dark  with  scientific  scatter  guns.   The  application  of  the 
public  health  model  of  practice  to  this  situation  is  long  past  due. 

The  APHA  Executive  Board  at  its  July  meeting  reviewed  the  AIDS  situation 
and  concluded  that  the  nation's  single  most  urgent  current  need  is  the  prompt 
development  of  a  comprehensive  AIDS  research,  surveillance  and  monitoring 
plan.   Without  such  a  plan  we  will  unwittingly  waste  much  of  whatever  time, 
talent  and  money  are  applied  to  the  AIDS  problem.  _ 

We,  therefore,  ask  that  within  the  next  forty-five  days  Assistant 
Secretary  Brandt  convene  a  meeting  of  national  experts  in  epidemiology,  . 
immunology,  medical  research  and  other  appropriate  disciplines  for  the  purpose 
of  developing  an  AIDS  research  master  plan,  a  realistic  budget,  and  a 
priority  list. 

We  ask  that  this  research  plan  be  used  to  guide  AIDS  grant  awards  by  NIH, 
and  that  the  Administration  refrain  from  including  in  its  AIDS  activity 
reports  any  projects  funded  for  other  purposes,  which  are  only  tangentially 
related  to  AIDS,  and  which  are  not  part  of  the  master  plan. 

Then,  because  priorities  will  need  to  be  changed  as  new  information 
becomes  available,  we  ask  that  Dr.  Brandt  designate  a  standing  expert 
advisory  panel  ,  which  includes  members  from  outside  NIH  and  the  Department. 

We  respectfully  urge  also  that  Dr.  Brandt  assign  for  prompt  implementation 
the  interprofessional  "AIDS  update"  report  which  has  been  talked  about  now 
for  several  months. 

And  finally,  because  any  master  plan  must  address  and  in  certain  senses 
must  rest  upon  various  policies,  procedures  and  interagency  agreements,  we 
would  like  to  make  the  following  brief  points: 

First,  the  achievement  of  adequate  surveillance  and  monitoring  will 
necessarily  require  that  these  activities  be  decentralized  by  the  Center  for 
Disease  Control,  at  least  to  the  extent  of  expanding  local  health  department 
I 


278 


capacities  in  those  jurisdictions  where  the  major  AIDS  case  clusters  occur. 
At  present  these  would  include  at  a  minimum  the  cities  of  New  York, 
San  Francisco,  Los  Angeles,  Miami,  Philadelphia,  Boston  and  Newark.   We  ask 
that  Dr.  Brandt  direct  such  decentralization,  and   convene  a  meeting  of 
these  local  health  officers  and  CDC  task  force  leaders  to  develop 
implementation  policies. 

Second,  we  believe  it  is  essential  that  AIDS  be  declared  a  reportable 
condition  nationwide.   But  we  recognize  that  a  particular  problem  with 
confidentiality  is  involved,  and  we  note  the  well-known  distorting  influence 
which  this  factor  can  have  on  incidence  statistics.   The  recent  downturn  in 
the  number  of  new  cases  identified  in  New  York,  for  example,  might  well  be 
an  artifact  of  that  state's  new  reporting  requirement  cccibined  with 
well-founded  concerns  about  our  system's  ability  to  assure  adequate  privacy. 
We  understand  that  New  York  City  Health  Commissioner  Senser  and  the 
National  Gay  Task  Force  have  devised  a  workable  plan  for  dealing  with  the 
privacy  issue,  and  we  commend  them.   We  would,  however,  like  to  add  one 
important  item  to  their  proposal:   We  urge  that  any  reporting  system  include 
the  zip  code  of  residence,  because  that  information  will  have  significant 
utility  in  applied  research,  and  expecially  in  efforts  at  prevention  and 
service  planning. 

Third,  we  wish  to  note  that  although  it  may  presently  be  necessary  to 
combine  under  one  legislative  provision  new  funds  for  AIDS  treatment  and 
prevention,  we  have  long  and  conclusive  experience  which  demonstrates  that 
treatment  urgencies  in  our  high  cost  hospital  system  will  consume  whatever 
funds  become  available.   If,  therefore,  we  intend  to  have  funds  for 
prevention,  it  will  be  necessary  to  assign  them  specifically  by  percentage 
or  dollar  amount,  either  in  legislation  or  regulation.   To  neglect  this  point 
will  be  to  lose  once  again  any  viable  efforts  at  meaningful  prevention. 
Fourth,  we  plead  with  the  White  House,  OMB,  Secretary  Heckler,  the 
National  Institutes  of  Health,  and  all  others  involved  in  the  question  of 
AIDS  funding  decisions  to  recognize  the  epidemiological  urgency  of  this 
situation,  and  to  resist  any  temptation  to  draw  inappropriately  rigid 
policy  lines,  or  to  use  the  AIDS  crisis  as  leverage  for  the  reform  of  flaws 
in  our  current  systems.   The  imperfections  in  process  at  NIH,  the  tendency 
towards  solo  performance  at  CDC,  and  the  limitations  of  the  categorial 
funding  approach  long  favored  by  Congress  are  all  well  known  problems. 
They  are  worthy  of  attention  and  remedy.   But  not  now,  not  using  the  AIDS 
crisis  as  the  lever.   Efforts  at  system  reform  must  not  be  made  on  the  backs 
of  AIDS  victims  and  the  hundred  of  thousands  of  our  citizens  now  at  risk. 

Finally,  Mr.  Chairman,  we  at  APHA  hope  that  your  Committee,  Mr.  Waxman's 
Committee,  and  the  Congress  of  the  United  States  will  continue  to  press  forward 
on  this  issue,  giving  leadership  where  the  White  House  thus  far  has  not.   We 
urge  the  Department  and  Dr.  Brandt  to  take  the  necessary  next  steps.   And  we 
sincerely  offer  APHA's  assistance  and  participation  wherever  the  Department, 
the  Congress  or  the  Administration  might  desire  it. 

On  behalf  of  all  the  membership  of  APHA,  I  thank  you  for  this 
opportunity. 


279 

Mr.  Weiss.  Thank  you  very  much. 

Before  we  start  our  questioning,  may  I  indicate  again  that  we 
will  be  operating  under  a  5-minute  rule.  I  have  only  one  question. 

I  thought  that  the  testimony  was  very  clear  and  precise.  I  am  im- 
pressed by  the  efforts  which  your  local  organizations  and  the 
American  Public  Health  Association  have  undertaken,  as  well  as 
by  the  responsibilities  which  have  been  assumed  by  other  localities. 

I  am  also  impressed  by  the  cooperation  and  coordination  that  ap- 
parently exists  between  the  departments  of  health  in  your  cities, 
and  especially  the  gay  community,  which  is  the  community  most 
affected  in  this  situation. 

:  We  have  had  discussions  over  the  course  of  not  only  these  past  2 
days  but  since  we  have  taken  note  of  the  problem  in  Congress  as  to 
the  budgetary  problems  involved.  Dr.  Sencer,  you  have  indicated  in 
your  testimony  that  if  you  assume  that  only  200  patients  are  hospi- 
talized per  day  in  New  York  City  at  a  $1,000  per  day  cost,  that  you 
are  talking  about  a  bill  of  around  $73  million  a  year. 

Could  each  of  you  try  to  give  us  what  you  consider  to  be  your 
overall  best  guess  or  judgment  as  to  what  kind  of  moneys  are 
needed  for  research,  treatment,  and  the  various  corollary  educa- 
tional and  other  services  that  you  each  have  spoken  about?  What 
kind  of  money  are  we  talking  about  annually  or  over  the  course  of 
the  next  3  years? 

Dr.  Sencer? 

Dr.  Sencer.  Speaking  only  for  the  city  of  New  York,  it  is  our  es- 
timate that  in  the  health  department  alone  we  are  expending  on — 
(this  does  not  get  into  the  matter  of  diagnosis  or  treatment) — 
purely  the  public  health  aspect,  surveillance,  public  education — we 
are  spending  about  $1  million  at  the  present  time.  And  $125,000  of 
that  is  in  the  form  of  a  cooperative  agreement  from  CDC  for  the 
type  of  decentralized  surveillance  that  Mr.  Matek  was  talking 
about.  The  rest  is  out  of  direct  city  funds — we  had  a  $250,000  new 
appropriation — we  are  using  other  existing  funds. 

Other  departments  such  as  the  welfare  department,  are  spending 
an  untold  amount.  And  the  Hospital  Corporation  is  part  of  that  $73 
million. 

I  would  estimate  that  in  New  York  City,  the  cost  of  treatment  of 
AIDS  plus  the  prevention  work,  the  surveillance  work,  the  commu- 
nity support  is  going  to  come  close  to  $100  million.  And  most  of 
that  is  going  into  the  treatment  aspect  of  it. 

Mr.  Weiss.  Do  you  have  any  estimate  or  any  basis  for  making 
any  estimate  as  to  what  you  think  ought  to  be  spent  at  the  nation- 
al level,  both  for  research  as  well  as  the  other  activities  you  spoke 
about? 

Dr.  Sencer.  I  would  not  want  to  speak  to  the  amount  of  money 
that  should  be  spent  for  treatment.  Let  me  just  speak  to  the  re- 
search. I  think  research  is  driven  by  the  individuals  who  are  capa- 
ble of  doing  the  research.  Rather  than  approach  it  from  a  finite 
dollar,  I  think  that  in  a  situation  like  this  there  needs  to  be  a  cer- 
tain open-endedness  of  the  appropriation  system  and  the  NIH  re- 
search grant  administration,  so  that  as  fundable  good  research  be- 
comes available,  it  can  be  funded  in  a  situation  such  as  this. 

I  just  hate  to  say  $15  million,  $20  million,  because  it  depends 
really  upon  the  ideas  and  upon  the  capability  of  the  investigators 


280 

in  the  field  rather  than  Congress  or  the  administration  setting  a 
dollar  figure  to  shoot  at.  This  is  when  you  end  up  with  other  things 
being  charged  against  that  particular  budget. 

Mr.  Weiss.  Thank  you. 

Dr.  Silverman? 

Dr.  Silverman.  Yes. 

As  I  mentioned,  we  are  spending  over  $4  million  a  year  in  San 
Francisco.  And  just  a  rough  estimate  for  most  of  the  prevention  ac- 
tivities, the  counseling  activities,  the  educational  activities,  all  of 
these  kinds  of  things,  in  looking  at  it,  I  would  suggest — and  this 
would  also  help  for  the  outpatient  activities  and  some  of  the  inpa- 
tient activities — about  $25,000  per  case.  Obviously,  that  averages 
out  when  someone  is  in  the  hospital  that  it  is  a  lot  more. 

I  think  for  treatment,  rather  than  getting  into  a  specific  number, 
if  we  can  change  the  medicare  policies  so  that  the  cities  are  not 
burdened  with  this,  and  if  we  can  change  the  SSI  policies,  so  that 
would  take  some  of  the  burden  off,  that  would  reduce  the  local  ex- 
penditure. 

With  regard  to  research,  it  is  a  hard  one,  but  I  also  know  that 
when  a  great  deal  of  money  is  put  into  research  and  it  is  carefully 
distributed,  results  do  appear.  And  a  lot  of  the  research  that  we 
are  talking  about  that  I  want  to  see  besides  the  basic  research  is 
epidemiologic  research,  and  that  costs  a  lot  of  money  because  there 
is  a  lot  of  investigation,  a  lot  of  interview.  And  I  think  the  figure  of 
about  $50  million  for  1984  is  a  pretty  good  ball  park  number. 

Now,  it  is  hard  to  get  much  more  specific  than  that.  But  I  think 
that  is  a  number  that  we  feel  would  hopefully  be  adequate. 

Mr.  Weiss.  Mr.  Matek. 

Mr.  Matek.  Mr.  Chairman,  I  would  comment  that  Dr.  Silver- 
man's figure  of  $50  million  represents  not  a  final,  total  budget  but 
a  next  step.  It  might  be  an  annual  allocation  to  get  things  rolling. 

Bluntly  speaking,  there  is  no  responsible  answer  to  your  question 
now.  There  could  be  within  about  90  days  if  Dr.  Brandt  would  con- 
vene the  panel  we  recommended  very  promptly.  I  would  propose 
that  Dr.  Brandt  be  given  100  days  to  give  you  a  responsible  answer 
to  your  question  on  condition  that  the  answer  not  be  censored  by 
0MB  first. 

Mr.  Weiss.  Thank  you  very  much. 

Mr.  Walker. 

Mr.  Walker.  Thank  you,  Mr.  Chairman. 

Dr.  Sencer,  I  have  been  reviewing  some  of  the  attachments  that 
you  sent  along  with  your  statement  with  regard  to  the  number  of 
cases  and  so  on.  It  interests  me  that  in  1983  we  have  seen  a  signifi- 
cant drop  in  the  number  of  cases,  where  you  show  the  onset  of 
symptoms,  particularly  in  the  second  quarter  of  1983. 

Is  there  any  explanation  you  can  give  us? 

Dr.  Sencer.  Yes,  there  is  an  explanation.  This  is  the  date  of 
onset  of  symptoms,  and  many  of  the  cases  are  not  reported  until 
they  have  been  ill  for  a  period  of  time  because  sometimes  the  onset 
of  symptoms  is  not  pathognomonic  of  AIDS. 

If  you  look  at  the  next  page,  the  bottom  of  the  page,  "Trends," 
you  will  see  we  are  having  an  average  of  50  cases  reported  a  month 
in  New  York  City.  It  is  up  a  little  over  last  year,  when  we  were 


281 

having  42  cases  a  month.  This  year,  we  are  seeing  50  cases  a 
month.  So  I  don't  think  this  is  an  artifact  of  the  reporting  process. 

Mr.  Walker.  That  helps  clarify.  Thank  you. 

The  other  thing  that  I  noticed  is  that  you  have  recently  stated 
that  the  Haitians  should  be  removed  from  the  list  of  major  AIDS 
risk  groups.  Certainly,  in  some  of  the  testimony  we  had  yesterday, 
it  would  seem  to  suggest  that,  too.  But  in  your  statistical  list,  the 
AIDS  cases  without  apparent  risk  group  that  you  gave  us  does  indi- 
cate that  the  highest  number  there  are  Haitians  without  a  history 
of  homosexuality  or  intravenous  drug  use. 

Dr.  Sencer.  Let  me  try  and  explain  this. 

Mr.  Walker.  Fine. 

Dr.  Sencer.  We  feel  that  there  is  a  good  scientific  explanation 
for  the  transmission  of  disease  in  the  homosexual  male  population, 
in  the  IV  drug  abusing  population,  and  in  the  hemophiliacs.  In  the 
Haitian  population,  we  still  do  not  know  what  the  mode  of  trans- 
mission is.  And  so,  therefore,  we  are  saying  that  this  is  a  group 
that  is  under  investigation,  that  we  do  not  know — we  lack  informa- 
tion rather  than  anything  else  on  this  population. 

We  have  had  some  of  our  Haitian  individuals  in  New  York  City 
who  have  been  diagnosed  as  being  drug  abusers,  and  at  that  point 
they  are  removed  and  placed  in  the  category  of  an  IV  drug  abuse 
patient.  A  few  of  them  have  also  been  diagnosed  as  being  homosex- 
ual males,  and  they  are  then  included  in  that  population. 

It  could  be  that  this  will  end  up  with  a  residual  in  which  we  will 
not  be  able  to  determine  what  the  risk  factor  is.  But  our  attempt 
has  been  to  describe  the  principal  risk  factors  by  the  modes  of 
transmission  that  we  know  of  at  the  present  time. 

Mr.  Walker.  Would  you  recommend  that  the  Federal  Govern- 
ment take  the  Haitians  off  as  a  risk  group? 

Dr.  Sencer.  I  think  that  it  depends  upon  how  the  Federal  Gov- 
ernment desires  to  describe  the  risk  group.  I  think  that  one  of  the 
nice  things  about  scientific  investigations  is  that  you  can  have 
honest  differences  of  opinion.  It  is  my  feeling  that  until  we  find  out 
the  method  of  transmission  of  the  disease  within  the  group,  I  don't 
think  that  they  should  be  included  as  a  risk  group. 

You  will  notice  that  we  have  sexual  partners  of  at-risk  groups  in 
that  situation,  too.  Most  of  these  are  sexual  partners  of  IV  drug 
abusers.  And  we  cannot  be  sure  beyond  doubt  that  it  may  not  be 
from  some  sharing  of  needles  that  have  not  been  reported.  So  this 
is  a  group  in  which  we  are  trying  to  determine  what  the  mode  of 
transmission  is. 

Mr.  Walker.  Thank  you. 

Dr.  Silverman,  you  put  a  great  deal  of  emphasis  on  the  preven- 
tion, which  I  think  is  very  encouraging.  Could  you  be  more  specific 
about  what  you  would  recommend  to  an  individual  who  wants  to 
avoid  AIDS? 

Dr.  Silverman.  The  prevention  for  individuals — you  mean  what 
actions  people  can  take? 

Mr.  Walker.  What  actions  people  can  take  that  would  reduce 
the  risk. 

Dr.  Silverman.  I  believe  the  obvious  one  with  the  IV  drug 
abusers  is  hopefully  not  to  keep  shooting  up  drugs.  But,  if  you  do, 
use  clean  needles,  sterile  needles.  That  probably  is  not  going  to 


282 

take  place.  But  I  feel  that  as  long  as  those  needles  have  to  be 
gotten  surreptitiously,  they  are  going  to  be  contaminated,  and  that 
is  always  going  to  be  a  problem. 

With  regard  to  sexual  practices,  I  consider  most  important  is  not 
sharing  bodily  fluids;  and  specifically  we  are  talking  right  now  spe- 
cifically— though  all  fluids  are  suspect — about  semen.  And  the  use 
of  a  condom,  though  not  a  guarantee,  can  certainly  reduce,  the  ex- 
change of  bodily  fluids. 

I  believe  that  knowing  your  partners  is  an  important  factor  in 
the  transmission  or  in  the  control  of  the  transmission  of  any  sex- 
ually transmitted  disease,  and  I  don't  think  this  one  is  any  differ- 
ent than  other  sexually  transmitted  diseases.  And  knowing  your 
partner  is  helpful,  not  only  to  individual,  but  it  also  helps  us  in 
public  health  when  we  are  trying  to  track  down  the  spread  of  dis- 
ease, to  know  the  contacts. 

Mr.  Walker.  Mr.  Matek,  you  were  critical  of  several  Govern- 
ment processes,  and  specifically  with  regard  to  the  administration. 
But  you  also  included  in  your  statement  some  criticism  of  the  cate- 
gorical funding  process  that  Congress  uses. 

Could  you  be  more  specific  about  that? 

Mr.  Matek.  Well,  my  perspective  on  that  comes  from  years  in 
administration,  trying  to  find  ways  to  be  flexible,  to  meet  local 
problems,  and  working  with  Federal  regulations  and  programs 
which  have  rather  strict  boundaries.  There  is  a  popular  school  of 
thought  in  health  administration  that  would  propose  the  break- 
down of  these  categorical  programs,  and  allow  people  at  State  and 
regional  levels  to  coordinate  programs  based  on  local  needs.  This  is 
difficult  to  do  when  you  have  categorical  funds. 

One  of  the  proposals  made  for  AIDS  is  that  there  be  a  separate 
AIDS  funding  program  similar  to  the  end-stage  renal  disease  pro- 
gram. And,  of  course,  when  you  propose  a  program  like  that, 
people  in  my  field  tend  to  say,  "Oh,  no,  not  another  one!" 

What  I  am  suggesting  is  that,  yes,  it  may  indeed  be  necessary  to 
have  yet  another  one,  at  least  this  time.  And  I  would  hate  to  see  us 
try  to  use  this  problem  as  the  occasion  for  system-wide  reform,  be- 
cause system  reform  just  takes  too  long.  This  is  an  epidemiologic 
emergency.  We  don't  have  any  time  to  waste. 

Mr.  Walker.  I  understand  that.  But  it  sounds  as  though  what 
you  are  saying  is  that  the  administration  moving  toward  block 
grant  proposals  in  some  of  these  fields,  including  the  health  field, 
does  in  fact  have  some  merit  with  regard  to  application  in  local 
areas  and  making  certain  that  money  can  be  used  in  a  responsive 
way  when  these  emergencies  arise  in  local  areas. 

Mr.  Matek.  The  block  grant  concept  could  be  useful  relative  to 
AIDS  in  a  limited  sense.  And  that  would  be  in  providing  money  for 
local  treatment,  money  to  local  health  departments  for  education, 
and  prevention  activities,  and  possibly  certain  kinds  of  applied  re- 
search. However,  to  get  at  the  issues  epidemiologically  and  scientif- 
ically now,  we  need  to  be  working  primarily  through  CDC  and 
through  the  National  Institutes  of  Health  in  a  focused  way. 

So  I  see  Federal  level  involvement  as  the  priority  of  the  moment, 
which  is  not  to  say  that  block  grants  wouldn't  be  useful  down  the 
line. 

Mr.  Walker.  Thank  you,  Mr.  Chairman. 


283 

Mr.  Weiss.  Mr.  Conyers. 

Mr.  Conyers.  Thank  you,  Mr.  Chairman. 

I  am  going  to  have  to  ask  to  be  excused.  There  is  a  whip  check  in 
the  Speaker's  office  on  the  Martin  Luther  King  bill  today. 

Mr.  Weiss.  We  are  glad  you  could  spend  any  time  at  all  with  us 
today. 

Mr.  Conyers.  I  want  to  commend  the  witnesses  I  have  heard. 
There  could  hardly  be  a  more  thoughtful  presentation  made  by 
them.  And  I  think  the  chairman's  description  of  the  problem  is  one 
that  does  not  beg  any  difference  of  view. 

Here  we  are  in  an  American  political  system,  intelligently  dis- 
cussing an  acute  emergency.  We  have  come  up  with — I  counted 
seven  reasonable  ways  to  move  on  the  problem.  And  the  issue  that 
is  raised,  of  course,  is  what  in  God's  name  are  we  going  to  really  do 
and  what  is  going  to  happen  after  today's  session. 

I  suppose  like  all  emergencies,  this  requires  special  action.  I 
won't  argue  with  that.  The  200,000  people  starving  in  Detroit  re- 
quire special  action;  11  million  people  out  of  work  require  special 
action.  We  have  got  lots  of  requests  for  special  action.  This  is  one. 
And  standing  on  its  own  merit  it  should  be  treated  that  way. 

But  to  think  that  we  are  going  to  whip  through  intelligently, 
through  this  screwed  up  system,  just  because  of  this  emergency,  is 
to  intelligently  beg  the  question,  because  we  are  going  to  have  to 
make  changes  in  who  pays  and  who  decides  what  actually  happens 
and  who  pays  for  not  deciding  what  actually  happens. 

This  is  a  political  question,  like  every  one  of  the  others  that  we 
are  presented  with.  And  so  I  am  not  quite  so  sure  if  this  issue 
should  not  be  made  the  basis  for  the  reform  of  the  systems.  It  must 
be.  It  must  be  treated  specially,  as  well. 

What  in  God's  name  can  people  in  Government  say  to  you  when 
we  spend  $900  billion  a  year  of  the  people's  money,  a  quarter  of  it 
going  on  weapons  of  insanity  that  further  destabilize  the  planet, 
when  we  meet  here  in  this  room  and  discuss  a  very  critical  health 
problem?  And  I  think  that  it  has  to  be  a  call  to  action  for  not  just 
those  victims  and  their  friends  and  those  who  intelligently  under- 
stand this  as  a  medical-social  problem,  but  somehow  we  have  the 
responsibility  to  teach  the  rest  of  the  American  people  that  this 
critical  problem  has  to  be  part  of  the  systemic  reform.  It  has  to  be 
part  of  the  understanding  that  goes  into  making  this  a  more  liv- 
able Nation  and,  in  the  end,  a  more  livable  world. 

So  I  am  prepared  to  bring  this  issue  down  to  brass  tacks.  I  am 
going  to  be  very  sympathetic  to  all  the  Federal  witnesses.  I  am 
hoping  that  our  former  colleague,  Mrs.  Heckler,  will  on  the  advice 
of  her  many  friends  on  this  subcommittee  choose  to  intervene  in  a 
way  that  is  in  keeping  with  her  spirit  as  a  Congresswoman — we 
worked  together  for  many  years — that  we  really  break  through  im- 
mediately on  an  emergency  basis  and  systemically  as  well.  And 
then  those  of  us,  if  we  succeed,  join  with  the  other  challenging 
social  problems  that  are  here;  and  if  we  don't  succeed,  I  think  we 
have  to  do  what  is  mandatory  in  our  society. 

It  has  to  become  part  of  the  political  decisionmaking  as  to  who 
represents  you  locally  and  nationally.  Because  unless  that  part  is 
added  on  to  it,  unless  this  dimension  is  honestly  discussed  here,  we 
are  really  being  superficial.  We  are  acting  like  somehow,  some- 


284 

where,  somebody  else  is  going  to  miraculously  solve  the  problem. 
We,  in  this  room,  are  the  people  whose  intelligence  and  energies 
are  going  to  determine  what  actually  happens. 

I  invite  the  witnesses  to  make  any  response  they  choose. 

Mr.  Matek.  Mr.  Congressman,  I  understand  what  you  are  sayir 
and  I  agree  with  you.  Again,  we  will  just  put  out  the  fact  th{ 
APHA  is  ready  to  do  whatever  it  is  we  are  asked  to  do. 

Dr.  Silverman.  That  is  also  certainly  true  of  the  local  health  o 
fleers.  I  am  speaking  for  the  U.S.  Conference  of  Local  Health  Off 
cers.  I  think  there  is  one  other  thing,  if  I  might  mention,  that 
think  is  most  important.  It  hasn't  been  addressed  today.  That  i 
what  some  people  have  termed  the  second  epidemic,  and  that  is  th 
anxiety  which  has  grown  up  around  this  disease. 

I  spend  probably  as  much  or  more  time  trying  to  deal  with  tha 
as  I  do  with  the  prevention  of  the  spread  of  the  disease  in  the  al 
fected  communities.  I  think  it  goes  to  something  that  Stan  said.  I 
is  most  important  that  there  be  a  coordinated  effort  from  CDC  an( 
the  local  health  officials  and  APHA,  in  the  dissemination  of  infor 
mation,  because,  as  information  comes  out,  sometime  if  it  is  no 
carefully  put  out  or  if  it  is  put  out  before  it  probably  should  be,  w( 
fuel  the  flames  of  this  anxiety,  and  the  social  impacts  of  that  are 
incalculable. 

Dr.  Sencer.  Mr.  Conyers,  I  am  touched  at  your  concern  over  this 
as  a  major  social  problem. 

Dr.  Silverman  talks  about  the  epidemic  of  anxiety.  I  think  this  is 
being  fueled  by  an  epidemic  of  homophobia.  It  is  giving  people  whc 
disapprove  of  a  certain  lifestyle  an  opportunity  to  come  forth  and 
be  against  that  by  picking  on  the  disease  rather  than  venting  their 
spleen,  their  bile,  upon  something  that  they  disagree  with. 

I  think  that  it  is  reminiscent  of  the  problems  of  the  1960's  and 
the  civil  rights  movement.  I  think  that  if  anything  good  comes  out 
of  our  struggles  against  the  disease,  it  may  be  a  better  understand- 
ing of  the  rights  of  individuals  to  their  own  lifestyles.  It  is  very 
troublesome  to  see  the  sorts  of  things  that  are  proposed  in  public 
forums  and  in  the  newspapers.  It  is  going  to  take  leadership  at  all 
levels  to  try  and  combat  this. 

Mr.  Weiss.  Thank  you  very  much. 

Thank  you,  Mr.  Conyers. 

Mr.  Matek.  Mr.  Chairman,  it  just  occurred  to  me  as  my  col- 
league spoke  that  it  might  be  helpful  for  the  members  of  the  com- 
mittee to  invite  comment  from  the  National  Institute  of  Mental 
Health  on  what  it  is  they  plan  to  do  relative  to  the  issue  of  stress 
and  anxiety  as  connected  to  this  problem. 

Mr.  Weiss.  Thank  you. 

Mr.  McCandless? 

Mr.  McCandless.  Thank  you,  Mr.  Chairman. 

I  certainly  agree  that  society  should  be  concerned.  But  I  would 
also  point  out  that  those  of  you  who  consider  this  some  kind  of  a 
back-breaking,  all-out  emergency,  that  there  is  another  disease 
that  has  been  on  the  face  of  the  Earth  for  quite  some  time  that  I 
am  very  concerned  about,  and  that  is  cancer. 

I  would  like  to  be  more  specific,  though. 

Dr.  Sencer,  you  mentioned  in  your  opening  remarks,  and  then 
followed  up  in  one  of  your  addendums,  on  page  3,  the  statistical 


285 

analysis  of  AIDS  cases  by  mutual  exclusive  risk  groups  in  New 
York  City.  This  then  was  broken  down  into  three  categories. 

You  have  your  homosexual-bisexual  males,  which  encompasses 
70  percent  of  the  cases.  Second,  there  are  the  IV  drug  users,  with 
no  history  of  homosexuality,  which  represents  22  percent  of  your 
total  group.  Third  are  hemophiliacs,  which  you  have  none  at  this 
time.  And  finally,  there  are  the  others  or  unknown  category  which 
number  76,  and  are  8  percent  of  the  total. 

Can  you  expand  on  this,  as  to  who  might  be  in  this  last  group? 

Dr.  Sencer.  Yes.  It  is  in  the  table  just  below  that,  where,  of  that 
76,  31  are  individuals  who  are  of  Haitian  origin,  who  do  not  have  a 
history  of  homosexuality  or  drug  abuse.  There  are  14  that  died 
before  they  were  interviewed,  so  we  have  no  adequate  information. 

Mr.  McCandless.  Was  this  determined  by  an  autopsy? 

Mr.  Sencer.  These  are  people  who  were  diagnosed  as  having 
AIDS,  but  there  was  not  an  interview  conducted  to  determine 
whether  there  were  IV  drug  abuse  patterns  or  homosexuality.  Most 
of  these  were  in  the  early  days  of  the  disease  when  the  risk  factors 
were  not  associated. 

Kaposi's  Sarcoma  is  a  disease  that  occurred  at  a  level  of  about 
two  to  three  cases  a  year  in  New  York  City,  prior  to  the  current 
outbreak  we  are  seeing.  It  has  a  different  age  distribution.  It  is 
mainly  in  older  males  of  Mediterranean  origin.  And  we  think  that 
because  of  the  way  the  definitions  are  set  up,  these  two  cases  are 
probably  background  cases  rather  than  involved  with  the  epidemic. 

At  the  present  time  there  are  three  people  whose  only  risk  factor 
may  have  been  the  blood  transfusions.  And  we  are  investigating 
those  at  the  present  time. 

As  I  mentioned,  we  have  12  individuals  who  are  sexual  partners 
of  individuals  in  the  at  risk.  One  of  those  was  a  woman  whose 
sexual  partner  was  a  bisexual  male  who  developed  AIDS.  The 
others,  all  except  two  on  which  we  have  no  adequate  history,  are 
sexual  partners  of  IV  drug  abusers.  And  here  you  are  always  left 
with  a  little  bit  of  wonder  whether  there  may  also  be  some  sharing 
of  the  needle  in  the  home. 

And  then  there  are  14  that  we  have  under  investigation  at  the 
present  time  which  we  have  not  yet  come  to  a  conclusion  on. 

Mr.  McCandless.  Would  you  say  there  is  a  medical  parallel  be- 
tween the  increase  in  AIDS  and  that  of  venereal  disease? 

Dr.  Sencer.  No,  sir.  As  a  matter  of  fact,  one  of  the  things  that 
gives  us  some  hope  that  there  is  a  change  in  patterns  that  Dr.  Sil- 
verman was  mentioning,  the  occurrence  of  infectious  syphilis  and 
gonorrhea  in  the  one  large  area  of  New  York  City  that  serves  prin- 
cipally the  homosexual  male  population,  incidence  of  these  two  ve- 
nereal diseases  is  down.  And  we  believe  that  this  may  be  an  indica- 
tion that  there  is  some  lifestyle  change. 

There  are  similarities  in  that  we  know  that  with  venereal  dis- 
ease the  person  who  has  multiple  sexual  partners,  particularly  un- 
known sexual  partners,  anonymous  sexual  partners,  is  more  likely 
to  develop  venereal  disease  than  those  who  have  a  single  partner 
or  fewer  partners.  And  this  has  been  part  of  the  advice  that  origi- 
nates within  the  gay  groups  themselves. 

The  Association  of  Physicians  for  Human  Rights  has  recommend- 
ed that  gay  males  limit  the  number  of  sexual  contacts,  particularly 


26-097    O— 83 19 


286 

with  anonymous  individuals.  So  I  think  this  is  bringing  about  some 
change  at  least  in  New  York  City  of  the  lifestyle. 

Mr.  McCandless.  Dr.  Matek,  you  have  emphasized  the  emergen- 
cy that  faces  us.  I  think  you  used  the  word  "catastrophic"  at  one 
point.  Maybe  I  am  misinformed  but  your  emphasis  seems  rather 
strong.  Could  you  define  to  what  extent  you  consider  this  an  emer- 
gency? 

Mr.  Matek.  Congressman,  the  urgency  I  feel  is  based  on  the  epi- 
demiological character  of  this  problem  and  on  our  lack  of  knowl- 
edge about  the  basic  mode  of  functioning  for  this  disease,  its  mor- 
phology. The  death  rate  from  AIDS  is  the  highest  of  any  disease 
with  which  we  are  currently  dealing.  That  is  the  basis  on  which  I 
consider  it  urgent. 

Second,  we  know  not  what  it  is,  where  it  comes  from,  how  it  gets 
where  it  goes,  and  where  it  is  going  from  there.  When  you  recall 
that  this  is  a  disease  with  an  incubation  period  of  1  to  2  years,  the 
next  question  is:  how  long  during  that  incubation  period  is  the  dis- 
ease transmissible?  And  how  many  people  are  exposed  during  those 
12  to  24  months  by  each  carrier? 

The  possibilities  are  phenomenal.  The  implications  are  devastat- 
ing, given  the  high  cost  of  treatment  and  the  high  death  rate.  So 
we  in  APHA  are  concerned  that  we  are  dealing  with  the  small  tip 
of  a  very  large  iceberg. 

Mr.  Weiss.  The  gentleman's  time  has  expired. 

Mr.  McCandless.  Thank  you,  Mr.  Chairman. 

Mr.  Weiss.  Mrs.  Boxer? 

Mrs.  Boxer.  Thank  you,  Mr.  Chairman. 

I  want  to  thank  the  panel  for  being  so  direct  and  responsive  to 
questions. 

Dr.  Sencer  and  Dr.  Silverman,  you  are  really  in  the  trenches. 
You  are  really  there.  And  from  your  reports,  I  think  you  are  just 
doing  an  exceptional  job.  But  I  get  the  feeling  that  you  are  there 
really  by  yourselves  in  terms  of  the  cities  handling  the  problem. 

What  I  would  like  you  to  tell  me,  if  you  can  try  to  put  this  into  a 
percentage,  we  know  how  much  you  are  spending  from  local  funds 
on  the  disease,  what  percentage  of  the  effort  that  is  being  expended 
in  your  cities  can  you  attribute  to  the  Federal  Government,  be- 
cause one  of  our  purposes  here  is  to  assess  how  helpful  we  are 
being  in  this  whole  fighting  of  this  disease.  And  I  wonder,  Dr.  Sil- 
verman, if  you  can  give  me  a  guesstimate  of  the  percentage  of  the 
effort  in  San  Francisco  that  you  can  say  is  directly  attributable  to 
the  Federal  Government? 

Dr.  Silverman.  We  have  now  in  San  Francisco  at  this  time  at 
least  one  representative  from  CDC  helping  us  in  our  epidemiologic 
investigations.  If  you  eliminate  that,  you  eliminate  pretty  much 
the  Federal  input  into  the  funding  for  this — for  our  problems.  It  is 
probably  98-plus  percent  local  funds. 

Mrs.  Boxer.  What  was  the  first  year  that  this  whole  issue  of 
AIDS  was  called  to  your  attention  as  being  a  serious  problem? 

Dr.  Silverman.  We  started  getting  involved  in  1981,  and  really 
in  large  part  almost  a  department-wide  effort,  in  1982. 

Mrs.  Boxer.  So  from  1981  to  1983  you  can  state  that  the  attack 
on  AIDS  has  been  launched  by  the  city  and  county  of  San  Francis- 
co, up  to  98  percent  of  the  effort? 


287 

Dr.  Silverman.  I  think  that  would  be  a  fair  estimate. 

Mrs.  Boxer.  Dr.  Sencer? 

Dr.  Sencer.  Doing  a  quick  calculation,  we  have  a  contract  with 
CDC  for  $125,000.  We  have  two  epidemiologists  assigned  to  the  city 
health  department  who  are  working  full  time  on  AIDS;  their 
salary,  probably  another  $100,000.  We  have  a  public  health  adviser. 
So  I  think  probably  roughly  $250,000  of  direct  support  comes  from 
the  Federal  Government.  That  is  out  of  our  estimated  health  de- 
partment. 

I  am  not  talking  about  hospitals  or  diagnostic  service.  About  25 
percent  may  come  from  Federal  assistance. 

Again,  part  of  that  $100,000 — part  of  the  costs  of  one  of  the  epi- 
demiologists is  not  directly  from  CDC.  It  is  the  one  opportunity  we 
have  had  to  use  the  block  grant. 

Mrs.  Boxer.  Okay,  you  don't  have  to  go  into  specifics.  We  can  say 
about  75  percent  of  the  effort 

Dr.  Sencer.  Local  money. 

Mrs.  Boxer.  Has  been  from  the  city  of  New  York  in  this  case? 

Dr.  Sencer.  That  is  right. 

Mrs.  Boxer.  I  just  want  to  state,  Mr.  Chairman,  I  think  this  is 
shocking  information,  absolutely  shocking.  And  it  is  very  impor- 
tant information  for  us  to  know.  And  I  would  like  to  ask  Mr. 
Matek  something.  And  I  particularly  want  to  thank  you,  because  I 
think  you  gave  us  some  very  concrete  ideas  as  to  what  to  ask  our 
Federal  people  here. 

I  have  heard,  and  this  is  not  something  I  have  seen,  but  I  have 
heard  that  the  White  House  is  going  to  come  in  with  a  recommen- 
dation that  $18  million  be  allocated  for  next  year.  I  can  tell  from 
the  answers  of  the  panel  that  that  would  not  be  anywhere  near 
adequate. 

I  want  to  ask  you,  Mr.  Matek,  in  your  experience  has  there  ever 
been  any  other  public  health  emergency  that  you  know  of  in  this 
country  where  the  health  people  in  the  Federal  Government  have 
had  to  be  pushed  so  hard  by  outside  groups,  by  Members  of  Con- 
gress? It  is  my  feeling,  having  served  in  local  government,  we  the 
elected  officials  are  always  being  pushed  by  the  health  profession- 
als, but  in  this  case,  as  you  pointed  out,  it  is  Members  of  Congress 
that  seem  to  be  pushing  on  the  health  professionals. 

Do  you  know  of  any  other  example  where  this  has  been  the  case? 

Mr.  Matek.  Eighty-five  years  ago  it  was  the  American  Public 
Health  Association  that  pushed  the  President  to  send  Walter  Reid 
to  Cuba.  Since  that  time  there  has  not  been  such  a  dramatic  incon- 
sistency between  public  health  goals  and  administration  goals  as 
now  exists.  We  understand  the  pressures  on  the  economy.  We  un- 
derstand the  priorities  of  the  Administration.  But  we  need  to  point 
out  the  inconsistencies  which  exist  in  this  case. 

I  do  not  know  of  other  similar  examples.  But  in  all  candor,  I 
must  confess  I  don't  know  of  similar  circumstances  either. 

Mr.  Weiss.  The  gentlelady's  time — Dr.  Silverman. 

Dr.  Silverman.  Just  a  quick  one. 

The  subject  came  up,  why  the  emergency?  I  think  when  we  talk 
about  1,800,  maybe  2,000  individuals,  that  looks  small.  But  right 
now  it  is  universally  fatal.  And  it  is  the  snuffing  out  of  young  peo- 
ple's lives,  not  that  one  can  place  a  value  at  any  age  level.  But  here 


288 

are  people  in  their  most  productive  time  of  life,  who  should  be  pro- 
viding services  back  to  the  communities  and  workmg  actively  in 
the  community.  And  these  are  just  the  people  who  are  dying.  I 
think  with  that  mortality  rate,  it  is  a  real  emergency.  Maybe  the 
problem  is  that  the  Federal  Government  in  the  past  has  been  look- 
ing at  the  number  rather  than  the  problem  itself. 
Mr.  Weiss.  Thank  you,  Mrs.  Boxer. 
Mr.  Craig? 

Mr.  Craig.  Thank  you  very  much,  Mr.  Chairman,  and  to  all  of 
you  panelists.  I  appreciate  your  testimony,  and  the  depth  of  it. 
A  couple  of  questions.  . 

Dr.  Sencer,  we  heard  yesterday  some  figures  that,  by  their  sur- 
face and  by  their  composition,  are  startling  and  important  in  the 
consideration  of  this  issue— that  the  reported  or  diagnosed  cases 
are  doubling  approximately  every  6  months.  That  figure  was  used 
by  several  professionals  yesterday. 

Apparently  they  are  using  national  averages,  based  on  the  infor- 
mation that  is  available  and  that  is  now  currently  being  collected. 
In  looking  at  your  addendum  on  page  1— speaking  of  trends  of 
AIDS  cases  by  month  in  New  York  City— you  don't  seem  to  demon- 
strate, based  on  the  1982  monthly  average  of  42  versus  the  1983 
monthly  average  of  50,  to  be  experiencing  that  kind  of  doubling 
effect. 

I  guess  the  best  thing  then  to  ask  you  is,  what  are  you  seeing  in 
your  city  as  to  the  increase  factor,  or  the  ratio,  of  increase? 

Dr.  Sencer.  As  you  point  out,  for  the  ^.ast  2  months  we  have  been 
talking  about  the  fact  that  it  does  not  appear  to  be  increasing  as 
rapidly  in  New  York  City.  Still  50  new  cases  a  month  is  certainly  a 
matter  of  continued  concern. 
Mr.  Craig.  Absolutely. 

Dr.  Sencer.  It  may  be  that  our  reporting  is  not  as  good  as  we 
would  hope  to  be,  and  this  is  why  we  are  undertaking  an  intensive 
review  in  conjunction  with  the  hospitals  of  New  York,  of  the  diag- 
noses, to  see  whether  we  are  missing  cases. 

It  could  be  the  fact  that  some  of  the  advice  that  Dr.  Silverman 
was  talking  about  is  being  heeded,  that  there  is  a  change  in  life- 
style that  puts  people  at  less  risk.  It  could  be  that  the  disease  is  not 
as  infectious  as  we  had  once  feared  that  it  would  be. 

Pure  speculation  would  be  that  perhaps  there  are  enough  sub- 
clinical cases,  people  who  do  not  actually  become  ill,  who  develop 
an  immunity  to  the  disease. 

I  know  that  it  is  continuing  to  increase  in  other  parts  of  the 
country.  It  may  be  that  the  disease  has  not  been  there  and  is  being 
seen  more  now.  But  we  in  New  York  at  the  present  time  are  in  a 
bit  of  a  plateau.  I  could  go  home  tomorrow  and  find  it  is  up  again.  I 
certainly  hope  not.  We  do  not  see  the  doubling  at  the  present  time. 
Mr.  Craig.  Dr.  Sencer,  you  say  you  are  going  to  review  your  in- 
formation-collecting capability  within  the  next  couple  of  weeks? 

Dr.  Sencer.  Yes;  what  we  are  doing  is  reviewing  diagnoses  in 
hospitals  to  see  whether  there  are  laboratory  diagnoses  that  have 
not  been  reported. 

Mr.  Craig.  Could  you  make  available  to  this  committee  that  in- 
formation, if  you  find  the  trends  you  indicated  here  have  substan- 
tially changed  or  need  correction? 


289 

Dr.  Sencer.  It  will  be  well-known,  sir;  yes,  sir. 

Mr.  Craig.  Also,  Dr.  Sencer,  I  was,  frankly,  a  little  surprised,  but 
pleased,  to  hear  of  the  frankness  of  Dr.  Silverman  as  it  relates  to 
what  he  feels  these  communities  ought  to  be  doing  as  a  preventive 
approach  to  this  problem  while  we  struggle  with  getting  on  with 
trying  to  find  some  cure  and/or  method  of  prevention  through  in- 
oculation or  whatever. 

I  am  not  trying  to  place  any  higher  level  of  importance  on  what  I 
am  about  to  ask.  I  see  the  aforementioned  subjects  as  two  separate, 
but  jointly  very  important  things,  in  the  total  problem. 

I  assume  that  you  and  Dr.  Silverman,  and  if  you  are  not  I  wish 
you  would  indicate,  doctor,  in  the  San  Francisco  Department  of 
Public  Health  are  communicating  very  loudly  and  clearly  to  the 
communities  involved  what  your  recommendations  as  to  how  they 
live  their  lifestyles  ought  to  be  conducted  in  a  preventive  way. 

Are  the  city  of  New  York  and  the  health  departments  of  New 
York,  approaching  this  in  a  similar  fashion? 

Dr.  Sencer.  I  think  that  our  approach  in  New  York  has  been — I 
wouldn't  say  loud,  but  we  have  tried  to  work  with  the  various  pop- 
ulation groups  at  risk  to  get  them  to  bring  out  the  recommenda- 
tions on  behavior  rather  than  this  being  something  that  comes 
down  from  city  hall  or  from  the  health  department. 

As  San  Francisco  has  done,  we  have  met  with  the  owners  of 
bathhouses  to  convince  them  to  develop  their  own  types  of  stand- 
ards for  education  within  this  particular  mileu.  As  I  mentioned,  we 
meet  biweekly  with  the  affected  communities,  as  San  Francisco 
does.  We  have  a  full-time  office  of  gay  and  lesbian  health  concerns 
that  helps  in  this  communication  to  the  population  group  affected. 

Mr.  Weiss.  Thank  you,  Mr.  Craig. 

Mr.  Craig.  Could  I  have  one  last  followup  on  this  question? 

Mr.  Weiss.  Very,  very  brief,  please.  We  have  had  Dr.  Brandt 
waiting  for  an  hour. 

Mr.  Craig.  As  you  come  to  us  and  encourage  increased  levels  of 
Federal  support  into  the  millions  of  dollars,  which  I  am  certainly 
sympathetic  to  based  on  the  scope,  the  magnitude  and  the  un- 
knownness  of  this  problem,  don't  you  believe  there  is  some  level  of 
responsibilty  at  the  public  health  level — not  to  be  quiet  about  prac- 
tices or  alternative  lifestyles  as  it  relates  to  this  problem,  but  that 
maybe  you  ought  to  be  really  quite  loud  about  it — as  to  what  you 
now  see  as  methods  of  prevention  or  practices  of  prevention? 

Dr.  Sencer.  I  think  that  there  are  ways  in  which  this  could  be 
accomplished  without  taking  to  the  soapbox. 

I  certainly  believe  that  the  information  is  going  to  be  better  ac- 
cepted and  come  from  a  stronger  support  if  it  comes  from  the  af- 
fected communities  themselves. 

This  is  not  to  say  that  we  do  not  publicly  make  these  statements 
in  New  York.  I  have  made  them,  the  mayor  has  made  them.  It  is  a 
matter  of  public  record.  But  I  believe  that  our  approach  has  been 
one  of  working  with  the  affected  groups  to  try  and  develop  the  ca- 
pabilities within — particularly  within  the  gay  community  to  edu- 
cate the  people  that  they  can  communicate  with.  There  are  gay 
newspapers  that  are  a  much  better  communicator  to  that  popula- 
tion than  our  New  York  newspapers,  the  general  circulation.  I 


290 

think  that  it  is  through  working  with  this  approach  that  we  can 
accompHsh  our  goals. 

I  think  that  pubHc  exhortation  has  not  stopped  the  spread  ot  ve- 
nereal disease.  It  has  been  by  making  adequate  treatment  available 
to  individuals  with  venereal  disease,  it  has  been  by  finding  cases 
and  bringing  them  to  treatment.  So  I  think  when  we  are  dealmg 
with  a  personal  behavior  of  this  nature,  mere  exhortation  without 
good  epidemiologic  assistance  to  bring  them  in  for  adequate  diagno- 
sis and  treatment  has  not  proven  itself  to  be  of  much  use  m  vene- 
real disease. 
Mr.  Weiss.  Thank  you,  Mr.  Craig. 

Dr.  Sencer.  Mr.  Chairman— I  am  very  pleased  that  this  hearing 
is  taking  place,  because  here  we  are  talking  about  the  problems  of 
communicating  about  sexual  behavior,  about  sexual  patterns.  I  can 
remember  when  it  was  within  my  lifetime  that  the  Surgeon  Gener- 
al was  cut  off  the  radio  for  talking  about  syphilis.  So  I  think  we 
have  come  a  little  ways  in  50  years. 
Mr.  Weiss.  The  Congress  is  very  bold  these  days. 
Mr.  Levin? 

Mr.  Levin.  Mr.  Matek,  in  your  written  testimony  you  say  it  has 
been  disappointing  to  hear  recent  charges  of  unresponsiveness  on 
the  part  of  CDC  and  NIH  related  to  their  AIDS-related  activities. 
But  such  appearances  can  be  understood  easily  enough  by  refer- 
ence to  the  fact  that  these  agencies  are  underfunded,  understaffed, 
and  overworked.  It  is  clear,  moreover,  that  the  administration's 
marching  orders  to  these  program  directors  is  unequivocal— in 
quotes— "Don't  ask  for  any  money,  make  us  look  as  good  as  you 
can  with  what  you  have  got." 
Would  you  elaborate  on  both  of  those  serious  charges? 
Mr.  Matek.  Those  are  my  conclusions  based  on  observing  behav- 
ior over  the  past  2  years.  Those  are  my  conclusions  based  on  re- 
peated discussions  with  various  officials,  asking  them  why  certain 
things  could  not  be  undertaken  in  epidemiological  research  or  in 
intervention. 

I  have  received  a  uniform  answer:  "There  is  no  money.  We  have 
gone  to  the  administration  to  ask  for  money  and  been  told  no. 
There  is  no  new  money  for  social  programs." 

We  have  witnessed  the  recommendations  of  0MB  over  two 
budget  periods  now,  consistent  with  that  principle,  that  policy  com- 
mitment. And  we  are  now  observing  the  budgetary  consequences 
within  our  operating  programs. 

I  am  left  with  no  other  conclusion.  Congressman,  and  I  wish  that 
someone  would  prove  me  wrong.  I  certainly  invite  the  White  House 
to  come  forward  and  show  me  that  I  am  wrong. 
Mr.  Levin.  Thank  you. 

Mr.  Weiss.  Thank  you  very  much,  Mr.  Levin. 
Gentlemen,  I  want  to  again  express  my  appreciation  for  the  work 
that  you  are  doing  in  your  own  communities  and  across  the  coun- 
try, and  for  giving  us  the  benefit  of  your  knowledge  and  of  your 
experience. 
Thank  you. 

Our  next  panel  is  the  panel  from  the  Department  of  Health  and 
Human    Services:    Dr.    Edward    Brandt,    Assistant   Secretary   for 


291 

Health,  and  Dr.  William  Foege,  Director,  Centers  for  Disease  Con- 
trol, are  our  chief  witnesses. 

I  understand  that  they  are  accompanied  by  a  number  of  their  as- 
sociates and  colleagues  who  will  be  in  the  front  row  behind  them  or 
accompanying  them  at  the  witness  table,  as  you  so  please,  Dr. 
Brandt  and  Dr.  Foege. 

Just  identify  the  people  who  are  with  you  if  you  will,  so  that  the 
reporter  and  those  of  us  up  here  will  be  able  to  know  who  is  speak- 
ing at  any  particular  time. 

Dr.  Fauci,  Deputy  Clinical  Director,  National  Institute  of  Allergy 
and  Infectious  Diseases;  Dr.  Henney,  Deputy  Director,  National 
Cancer  Institute;  Dr.  Quinnan,  Director,  Division  of  Virology, 
Office  of  Biologies,  Food  and  Drug  Administration;  Dr.  Chernoff, 
Director,  Division  of  Blood  Diseases  and  Resources,  National  Heart, 
Lung,  and  Blood  Institute. 

I  understand  that  Mr.  Thomas  Donnelly,  Assistant  Secretary  for 
Legislation,  is  also  in  the  audience.  Since  we  will  be  getting  into 
some  issues  with  which  he  has  been  involved,  I  think  it  would  be 
helpful  for  him  to  join  the  other  panelists  at  the  witness  table. 

Before  we  start,  let  me  just  indicate  how  pleased  I  am  that  we 
have  this  opportunity  to  discuss  with  Department  officials  some  of 
the  concerns  that  have  been  expressed  in  the  last  day  and  a  half  as 
well  as  to  explore  some  of  the  issues  which  the  subcommittee  has 
been  examining  over  the  course  of  these  past  8  or  10  weeks. 

Let  me  first  start  by  swearing  you  in  or  offering  the  affirmation. 

Would  you  all  stand? 

Do  you  swear  or  affirm  to  tell  the  truth,  the  whole  truth,  and 
nothing  but  the  truth? 

Let  the  record  indicate  that  each  of  the  witnesses  has  so  indicat- 
ed. 

Dr.  Brandt,  as  you  know,  we  have  your  prepared  statement.  It  is 
very  long  and  very  detailed,  and  we  welcome  it.  It  will  be  entered, 
without  objection,  into  the  record  in  its  entirety. 

Because  of  time  constraints,  the  subcommittee  would  appreciate 
if  you  would  try  to  summarize  rather  than  read  the  entire  state- 
ment. That  way  we  would  be  able  to  spend  the  bulk  of  our  time 
with  questions  which  I  know  I  and  the  other  members  of  this  panel 
have. 

Let  me  indicate  at  this  point  that  we  have  had  some  concern 
which  we  will  be  getting  into  in  greater  depth  as  the  hearing  goes 
on  regarding  the  obligations  and  responsibilities  of  this  subcommit- 
tee toward  not  just  you  individually,  but  the  Health  and  Human 
Services  Department  and  its  various  subagencies  and  representa- 
tives. 

As  you  may  know,  this  committee,  the  Government  Operations 
Corrimittee,  of  which  we  are  a  subcommittee,  was  created  specifical- 
ly to  provide  oversight  for  the  various  programs  not  only  in  the 
health  field,  but  in  all  fields  of  Government,  to  see  how  programs 
which  Congress  enacted  are  being  implemented,  how  they  are 
working,  which  programs  are  effective,  which  are  not,  how  the  re- 
sponsibilities are  being  discharged  by  those  people  in  the  executive 
branch  who  have  been  delegated  to  deal  with  those  programs. 

I  understand  that  most  executive  branch  staff,  not  only  in  this 
administration  but  in  every  administration  that  I  have  been  famil- 


292 

iar  with  at  all  levels,  Federal,  State,  and  local,  view  the  ideal  over- 
sight as  being  a  situation  where  they  come  in  and  tell  us  what  a 
wonderful  job  they  are  doing,  and  we  let  it  go  at  that. 

We  view  the  responsibility  somewhat  differently.  Our  responsibil- 
ity is  in  fact  to  go  out  and  check  to  see  what  kind  of  job  you  are 
doing.  That  means  and  has  meant  since  the  beginning  of  this  Re- 
public the  right  of  Congress  and  its  committees  and  subcommittees 
to  reach  into  the  agency,  to  have  access  to  the  personnel  of  those 
agencies,  to  have  access  to  the  files  of  those  agencies.  The  right  of 
Congress  to  that  access  has  been  repeatedly  affirmed  by  the  Su- 
preme Court  and  other  courts  that  have  dealt  with  it.  This  matter 
is  really  not  at  issue,  not  in  doubt. 

I  must  tell  you  that  it  has  been  a  difficult  experience  over  the 
course  of  these  last  10  weeks  to  experience  what  in  essence  has 
been  stonewalling  from  Secretary  Heckler  on  down  in  our  efforts  to 
discharge  our  responsibilities.  As  I  say,  we  will  be  going  into  specif- 
ics and  details  as  we  go  along. 

At  this  time.  Dr.  Brandt,  I  would  welcome  your  testimony. 

STATEMENT  OF  DR.  EDWARD  BRANDT,  ASSISTANT  SECRETARY 
FOR  HEALTH,  DEPARTMENT  OF  HEALTH  AND  HUMAN  SERV- 
ICES, ACCOMPANIED  BY  DR.  WILLIAM  FOEGE,  DIRECTOR,  CEN- 
TERS FOR  DISEASE  CONTROL;  DR.  JANE  HENNEY,  DEPUTY  DI- 
RECTOR, NATIONAL  CANCER  INSTITUTE;  DR.  ANTHONY  FAUCI, 
DEPUTY  CLINICAL  DIRECTOR  OF  INTRAMURAL  RESEARCH,  NA- 
TIONAL INSTITUTE  OF  ALLERGY  AND  INFECTIOUS  DISEASES; 
DR.  AMOZ  CHERNOFF,  DIRECTOR,  DIVISION  OF  BLOOD  DIS- 
EASES  AND  RESOURCES,  NATIONAL  HEART,  LUNG,  AND  BLOOD 
INSTITUTE;  DR.  GERALD  QUINNAN,  DIRECTOR,  DIVISION  OF 
VIROLOGY,  OFFICE  OF  BIOLOGICS,  FOOD  AND  DRUG  ADMINIS- 
TRATION; AND  THOMAS  DONNELLY,  ASSISTANT  SECRETARY 
FOR  LEGISLATION,  DEPARTMENT  OF  HEALTH  AND  HUMAN 
SERVICES 

Dr.  Brandt.  Thank  you  very  much.  We  appreciate  the  opportuni- 
ty we  have  to  discuss  with  you  the  acquired  immune  deficiency 
syndrome  [AIDS]. 

You  have  already  recognized  my  colleagues,  Mr.  Chairman.  You 
are  correct  that  we  do  have  long  and  complex  testimony.  And  I  will 
attempt  to  summarize  it,  yet  try  to  make  what  I  consider  to  be 
some  of  the  more  important  points. 

AIDS  has  been  officially  recognized  by  Secretary  Heckler  as  the 
Department's  highest  priority  emergency  health  problem.  During 
the  past  2  years,  AIDS  has  caused  suffering  and  death  in  far  too 
many  people. 

AIDS  is  a  recently  recognized  health  problem  which  is  character- 
ized by  a  severe  and  persistent  breakdown  in  part  of  the  immune 
system. 

For  epidemiologic  purposes,  CDC  defines  an  AIDS  case  basically 
as  an  individual:  First  with  a  reliably  diagnosed  disease  that  is  at 
least  moderately  indicative  of  underlying  cellular  immune  deficien- 
cy, and  second  with  no  known  underlying  cause  for  that  deficiency 
or  any  other  cause  of  reduced  resistance  reported  to  be  associated 
with  that  disease.  Persons  with  AIDS  are  susceptible  to  some  tj^es 


293 

of  cancer,  such  as  Kaposi's  sarcoma  and  other  B  cell  lymphomas, 
and  a  variety  of  life-threatening  infections,  the  most  common  of 
which  is  Pneumocystis  carinii  pneumonia.  There  has  been  no  case 
reported  in  which  the  immune  system  of  an  AIDS  patient  has  re- 
turned to  normal. 

From  June  1981  until  July  26,  1983,  the  Centers  for  Disease  Con- 
trol has  received  reports  of  2,044  persons  with  AIDS — 122  of  these 
cases  were  reported  from  20  foreign  countries.  In  the  United 
States,  1,922  cases  have  been  reported  from  39  States,  the  District 
of  Columbia,  and  Puerto  Rico.  A  complete  breakdown  by  State  is 
included  in  the  testimony. 

The  average  age  of  AIDS  victims  is  35  years;  93  percent  are  men. 
Death  has  been  reported  in  at  least  743  or  39  percent  of  the  1,922 
cases.  Of  the  598  people  diagnosed  more  than  1  year  ago,  almost 
two-thirds  have  died. 

To  date,  reported  cases  fall  into  five  categories:  homosexual  or  bi- 
sexual men  with  multiple  sexual  partners,  intravenous  drug 
abusers,  persons  of  Haitian  origin,  persons  with  hemophilia,  and 
others.  Eighty-eight  percent  of  the  reported  cases  from  the  United 
States  fall  into  the  first  two  risk  groups.  Because  sociocultural  dif- 
ferences may  lead  to  problems  in  obtaining  sensitive  information 
from  Haitians  residing  in  the  United  States,  the  apparent  lack  of 
overlap  between  the  Haitian  and  other  groups  must  be  interpreted 
cautiously. 

The  6  percent  of  patients  who  have  not  been  placed  in  any  of 
these  groups  are  the  subject  of  intensive  investigation.  Included  in 
this  group  are  19  people  who  are  sexual  partners  of  risk  group 
members,  17  patients  who  received  blood  transfusions  within  3 
years  of  becoming  ill,  10  patients  who  have  Kaposi's  sarcoma  but 
normal  immunological  studies,  and  15  individuals  on  whom  com- 
plete medical  histories  have  been  obtained  but  who  cannot  be  fur- 
ther classified  in  relation  to  known  high  risk  groups.  The  remain- 
ing cases  have  been  reported  in  individuals  on  whom  complete 
medical  histories  could  not  be  obtained. 

The  Federal  response  to  AIDS  began  in  June  1981  with  the  inves- 
tigation and  subsequent  publication  in  CDC's  Morbidity  and  Mor- 
tality Weekly  Report  (MMWR)  of  the  first  five  cases  reported  from 
Los  Angeles.  Medical  epidemiologists  were  immediately  dispatched 
from  CDC  to  investigate  additional  cases  in  New  York  City  and 
California. 

The  admission  of  the  first  AIDS  patient  to  the  Clinical  Center  at 
the  National  Institutes  of  Health  occurred  on  June  16,  1981,  ap- 
proximately 11  days  after  the  first  cases  were  reported  in  the 
United  States.  Subsequently,  the  FDA  and  the  Alcohol,  Drug 
Abuse,  and  Mental  Health  Administration  became  actively  in- 
volved in  the  AIDS  investigation.  Because  of  the  extensive  multia- 
gency  involvement,  I  appointed  a  Public  Health  Service  Executive 
Committee  on  AIDS  to  formalize  coordination  of  the  response  of 
these  agencies  to  the  AIDS  problem. 

Because  there  are  gaps  in  our  understanding  and  because  of  the 
complex  nature  of  AIDS  and  AIDS  investigations,  the  public  is  ap- 
propriately concerned  about  AIDS  and  the  Public  Health  Service's 
response  to  this  problem.  Therefore,  it  may  be  useful  to  review 
some  of  the  specific  questions  that  have  been  raised  by  the  public. 


294 

We  believe  AIDS  is  transmitted  sexually;  less  frequently  through 
transfusion  of  blood  or  blood  products;  or  by  the  misuse  of  needles. 
There  is  no  evidence  that  the  disease  is  spread  through  air  food, 
water,  or  other  casual  contact.  On  the  contrary,  AIDS  is  a  ditticult 

disease  to  contract.  , ,      ,  .         o    ■ 

The  risk  of  acquiring  AIDS  through  a  blood  transfusion  is  ex- 
tremely small.  We  do  not  yet  know  the  cause  of  AIDS,  but  the  evi- 
dence is  strong  that  we  are  dealing  with  an  infectious  agent  with  a 
long  incubation  period.  The  most  plausible  agents  are  viruses. 

Treatment  is  available  for  Kaposi's  sarcoma  and  for  some  of  the 
infections  which  affect  AIDS  victims.  Though  a  cure  is  not  present- 
ly available,  we  are  convinced  that  steps  can  be  taken  to  prevent 
the  acquisition  of  AIDS.  And  in  March  1983,  we  published  our  rec- 
ommendations in  the  MMWR. 

All  collected  information  used  to  identify  an  individual  patient  is 
generally  protected  under  the  provisions  of  the  Privacy  Act.  CDC 
has  a  longstanding  position  of  protecting  patient  confidentiality,  a 
position  which  has  been  upheld  many  times  in  the  courts.  Howev- 
er, because  of  recent  concerns  expressed  in  the  press  and  by  some 
State  and  local  health  officials,  a  system  is  being  developed  by  CDC 
whereby  information  on  new  AIDS  cases  will  be  reported  to  CDC 
with  all  identifying  information  deleted  by  health  departments  and 
the  case  identified  by  a  code  number. 

As  to  expenditures,  the  Public  Health  Service  spent  $5.5  million 
directly  on  AIDS  in  fiscal  year  1982  and  will  spend  $14.5  million  in 
fiscal  year  1983.  In  addition,  the  recently  signed  supplemental  ap- 
propriations bill  provides  an  additional  $12  million  for  obligation  in 
fiscal  1983  and  fiscal  1984. 

To  address  these  and  other  public  health  concerns,  the  Public 
Health  Service  has  established  a  national  AIDS  hotline  and  has 
made  a  factsheet  and  biweekly  information  package  available  to 
the  public  and  to  the  professions. 

With  your  permission,  Mr.  Chairman,  I  would  like  to  submit  for 
the  record  copies  of  the  material  used  on  the  hotline  as  well  as  the 
factsheet  and  the  most  recent  biweekly  information  package. 

On  May  24,  1983,  I  issued  a  press  release  to  clarify  the  hazard  of 
AIDS  and  the  status  of  Public  Health  Service  efforts  in  combatting 
the  AIDS  problem.  Let  me  now  present  the  Public  Health  Service 
operational  plan  which  we  have  followed  in  attempting  to  solve  the 
AIDS  problem. 

First,  I'll  talk  about  CDC.  The  activities  of  the  CDC  fall  into  four 
major  areas:  surveillance,  epidemiologic  studies,  laboratory  investi- 
gations, and  dissemination  of  information. 

Using  epidemiological  studies,  CDC  has  sought  to  determine  risk 
factors  and  modes  of  transmission  for  AIDS.  Laboratory  work  has 
been  in  the  areas  of  immunology  and  infectious  diseases.  CDC  has 
disseminated  timely  information  to  medical  and  public  health  per- 
sonnel and  the  general  public  about  the  AIDS  problem.  Between 
June  1981  and  July  1983,  21  articles  related  to  AIDS  have  appeared 
in  the  Morbidity  and  Mortality  Weekly  Report. 

Turning  now  to  the  NIH,  it  is  supporting  a  wide  range  of  AIDS 
research  by  its  own  scientists  and  by  university  and  private  investi- 
gators. Collaborative  as  well  as  independent  research  efforts  have 
been  undertaken  both  intramurally  and  extramurally  by  the  Na- 


295 

tional  Cancer  Institute  (NCI),  National  Institute  of  Allergy  and  In- 
fectious Diseases  (NIAID),  National  Heart,  Lung,  and  Blood  Insti- 
tute (NHLBI),  National  Institute  of  Neurological  and  Communica- 
tive Disorders  and  Stroke  (NINCDS),  departments  of  the  NIH  Clini- 
cal Center,  and  other  components  of  the  NIH. 

Thus  far,  69  AIDS  patients  have  been  treated  at  the  NIH  Clinical 
Center,  of  whom  15  have  died. 

Extramural  activities  have  included  the  issuance  of  two  requests 
for  applications  (RFA's)  jointly  sponsored  or  funded  by  the  NCI  and 
the  NIAID.  The  purpose  of  this  recent  RFA,  entitled  "Infectious 
Etiology  of  Acquired  Immune  Deficiency  Syndrome  and  Kaposi's 
Sarcoma,"  is  to  encourage  studies  on  the  search  for  the  isolation 
and  the  characterization  of  the  biological  agents  which  may  be  the 
primary  causative  factor  in  AIDS  and  Kaposi's  sarcoma. 

There  are  more  than  30  individual  research  projects  within  the 
intramural  laboratories  of  NIAID  which  directly  relate  to  AIDS. 
The  NIAID  intramural  program  has  recently  awarded  a  contract  to 
the  New  York  Blood  Center  to  obtain  specimens  of  blood,  semen, 
feces,  and  saliva  from  several  groups  of  individuals  considered  at 
high  risk  of  acquiring  AIDS.  These  specimens  will  be  obtained  reg- 
ularly and  stored.  If  AIDS  develops  in  any  of  the  studied  partici- 
pants, these  specimens  will  provide  valuable  material  for  many  of 
the  projects  concerned  with  determining  the  etiologic  agent,  devel- 
oping detection  methods,  and  studying  modes  of  disease  transmis- 
sion. 

Four  applications  have  been  funded  in  response  to  the  NCI  re- 
quest for  application  on  AIDS  research  that  was  issued  in  August 
1982.  Other  funds  support  research  project  grants  not  submitted  in 
response  to  the  RFA,  including  the  effects  of  cytomegalovirus  on 
cell-mediated  immunity,  plus  AIDS  projects  at  ongoing  NIAID  Sex- 
ually Transmitted  Disease  Centers  and  Centers  for  Interdisciplin- 
ary Research  on  Immunologic  Diseases. 

NCI  intramural  activities  can  be  divided  into  research  concerned 
with  AIDS  and  peripheral  research  examining  the  immune  system 
from  a  broader  perspective.  NCI  has  called  upon  a  variety  of  re- 
sources in  an  effort  to  respond  quickly.  Mechanisms  of  response 
and  support  include  grants,  cooperative  agreements,  and  contract 
awards,  the  development  of  specialized  RFA's,  special  workshops, 
the  establishment  of  an  extramural  working  group,  and  presenta- 
tions to  and  discussions  with  the  NCI  advisory  bodies. 

In  September  of  1981,  roughly  4  months  after  this  disease  was 
first  defined,  the  NCI  sponsored  a  workshop  on  AIDS  involving 
NCI-supported  scientists,  along  with  NCI  staff.  The  workshop  was 
developed  for  the  NCI's  Division  of  Cancer  Treatment  Board  of  Sci- 
entific Advisers.  Three  meetings  have  taken  place  recently.  One  of 
these  brought  together  all  of  the  cooperative  agreement  grantees. 
Two  meetings  involved  the  combination  of  NCI  AIDS  intramural 
task  force  staff  and  outside  Federal  and  university  scientists  active 
in  the  area  of  retrovirus  and  AIDS. 

The  NCI  continues  to  encourage  investigator-initiated  grant  ap- 
plications and  expedites  the  review  of  any  applications  related  to 
AIDS  that  are  received.  NCI  has  formed  an  extramural  working 
group  which  consists  of  all  NCI  funded  grantees  and  includes  NCI 
and   other  NIH   staff  with   participation  from   CDC.   This  group 


296 

meets  regularly  to  discuss  ongoing  research  and  share  preliminary 

NHLBI  is  primarily  involved  in  two  aspects  of  the  AIDS  problem. 
One  in  regard  to  its  responsibility  for  hemorrhagic  disorders,  such 
as  the  hemophilias,  NHLBI  is  concerned  with  the  care  and  treat- 
ment of  these  patients  with  blood  and  blood  products;  and  two,  m 
regard  to  blood  and  blood  products,  the  Institute  has  a  major  con- 
cern for  the  safety  of  these  products.  NHLBI  sponsored  a  confe^ 
ence  on  the  association  of  blood  and  blood  product  use  with  AIDS 
on  March  15,  1983.  It  was  attended  by  35  scientists,  clinicians  and 
administrators  to  develop  research  recommendations  for  the  Insti- 

^With  the  cosponsorship  of  the  NCI  and  the  NIAID,  NHLBI  will 
hold  a  research  workshop  on  the  epidemiology  of  AIDS  m  Septem- 
ber 1983.  A  meeting  of  the  inter-agency  technical  committee  on 
heart,  blood  vessel,  lung,  and  blood  diseases  and  resources  which 
focused  on  the  current  state  of  knowledge  regarding  AIDS  was  held 
on  May  4,  1983.  ^,         ^         ^^,     ^ 

FDA's  efforts  have  been  focused  in  two  areas:  The  safety  ot  blood 
and  blood  products  with  regard  to  infectious  agents  transniissible 
through  these  products;  and  research  directed  toward  elucidating 
the  etiology  of  AIDS.  FDA  has  issued  guidelines  to  blood  collection 
centers  on  the  prevention  of  AIDS  through  the  screening  of  donors 

FDA  is  also  working  with  blood  product  manufacturers  in  an 
evaluation  of  methods  which  might  be  applied  to  clotting  factor 
concentrates  to  increase  the  safety  of  their  use.  Research  has  been 
performed  at  FDA  regarding  the  etiology,  pathogenesis,  and  treat- 
ment of  AIDS.  Studies  pertaining  to  the  etiology  of  AIDS  have  been 
directed  toward  studying  the  significance  of  herpes  viruses  in  these 

patients.  ,      m     j 

A  series  of  workshops  have  been  held  involving  the  Blood  and 
Blood  Products  Advisory  Committee,  the  Office  of  Biologies  staff, 
outside  expert  consultants,  manufacturers  and  representatives  of 
the  American  National  Red  Cross,  the  Council  of  Community  Blood 
Centers,  the  American  Association  of  Blood  Banks,  the  American 
Blood  Resources  Association  and  the  National  Hemophilia  Founda- 
tion. 

Through  these  collaborative  efforts,  progress  in  developing  new 
procedures  for  increasing  the  safety  of  clotting  factor  concentrates 
have  been  accelerated.  One  such  product  is  currently  available,  and 
others  are  at  a  late  stage  of  development. 

The  National  Institute  for  Drug  Abuse  is  undertaking  several  in- 
vestigations to  study  AIDS  and  drug  abusers.  A  technical  review  to 
examine  issues  surrounding  risk  factors  related  to  drug  abuse  was 
convened  on  July  25  of  this  year.  NIDA  is  developing  programs  for 
staff  education  at  drug  treatment  centers  and  assisting  with  the 
distribution  of  other  Public  Health  Service  materials. 

The  National  Institute  of  Mental  Health  held  a  research  plan- 
ning workshop  yesterday  to  address  the  mental  health  aspects  of 
AIDS.  Research  will  be  encouraged  in  several  areas.  A  workshop  to 
address  the  emotional  concerns  and  support  needs  of  AIDS  patients 
and  health  care  providers  will  be  held  on  August  3. 


297 

It  is  important  to  recognize  that  a  number  of  nongovernmental 
organizations  have  worked  with  the  Public  Health  Service  in  plan- 
ning studies  of  AIDS  or  in  making  recommendations  for  AIDS  pre- 
vention, and  we  have  listed  some  of  those  on  page  25  of  my  testimo- 
ny. 

Mr.  Chairman,  members  of  the  subcommittee,  let  me  assure  you 
that  we  are  making  every  effort  to  cooperate  and  assist  you  in 
meeting  the  subcommittee's  responsibilities  in  a  manner  which 
does  not  violate  the  confidence  placed  in  us  by  patients,  physicians, 
and  State  and  local  health  officials. 

I  appreciate  the  opportunity  to  present  our  story  on  the  AIDS  ef- 
forts to  the  members  of  this  subcommittee.  The  continuing  commit- 
ment of  all  of  our  energies  is  required.  I  hereby  pledge  to  eliminate 
the  suffering  and  death  caused  by  this  problem. 

My  colleagues  and  I  shall  be  glad  to  respond  to  any  questions 
which  you  or  other  members  of  the  subcommittee  may  have. 

[The  prepared  statement  of  Dr.  Brandt  follows:] 


298 


DEPARTMENT  OF  HEALTH  &  HUMAN  SERVICES 


Public  Health  Service 


Office  of  the  Assistant  Secretary 

for  Health 
Washington  DC  20201 


Statement  By 


Edward  N.  Brandt,  K.D.,  Ph.D. 

Assistant  Secretary  for  Health 

Department  of  Health  and  Human  Services 


on 


Acquired  Immune  Deficiency  Syndrome  (AIDS) 


before  the 


Intergovernmental  Relations  and  Human  Resources  Subcommittee 

Committee  on  Government  Operations 

House  of  Representatives 

Congress  of  the  United  States 


August  2,  1983 


299 


Mr.  Chairman  and  Members  of  the  Subcommittee: 

Thank  you  for  this  opportunity  to  discuss  with  you  the  acquired  immune 
def-iciency  syndrome  (AIDS). 

I  am  accompanied  by:  Dr.  William  H.  Foege,  Director,  Centers  for  Disease 
Control;  Dr.  Amoz  I.  Chernoff,  Director,  Division  of  Blood  Diseases  and 
Resources,  National  Heart,  Lyng  and  Blood  Institute;  Dr.  Anthony  S.  Fauci, 
Deputy  Clinical  Director  of  Intramural  Research,  National  Institute  of  Allergy 
and  Infectious  Diseases;  Dr.  Jane  Henney,  Deputy  Director,  National  Cancer 
Institute;  and  Dr.  Gerald  Quinnan,  Director,  Division  of  Virology,  Office  of 
Biologies,  Food  and  Drug  Administration. 

AIDS  has  been  officially  recognized  by  Secretary  Heckler  as  the 
Department's  highest  priority  emergency  health  problem.  During  the  past  two 
years,  AIDS  has  caused  suffering  and  death  in  far  too  many  people. 

AIDS  is  a  recently  recognized  health  problem  which  is  characterized  by  a 
severe  and  persistent  breakdown  in  part  of  the  immune  system.  For 
epidemiologic  purposes,  CDC  defines  an  AIDS  case  basically  as  an  individual 
(1)  with  a  reliably  diagnosed  disease  that  is  at  least  moderately  indicative 
of  underlying  cellular  inmune  deficiency,  and  (2)  with  no  known  underlying 
cause  for  that  deficiency  or  any  other  cause  of  reduced  resistance  reported  to 
be  associated  with  that  disease.  Persons  with  AIDS  are  susceptible  to  some 
types  of  cancer,  such  as  Kaposi's  sarcoma  and  other  B  cell  lymphomas,  and  a 
variety  of  life-threatening  infections,  the  most  common  of  which  is 
Pneumocystis  carinii  pneumonia.  There  has  been  no  case  reported  in  which  the 
immune  system  of  an  AIDS  patient  has  returned  to  normal;  fatality  rates  of 
AIDS  cases  have  been  very  high. 

From  June  1981  until  July  26,  1983,  the  Centers  for  Disease  Control  (CDC) 
has  received  reports  of  2,044  persons  who  have  AIDS.  One  hundred-twenty- two 
of  these  cases  were  reported  from  20  foreign  countries.  In  the  United  States, 


300 


1,922  cases  have  been  reported  from  39  states,  the  District  of  Columbia,  and 
Puerto  Rico  (Figure  1).  More  than  60  percent  of  these  cases  were  reported 
from  New  York  City,  San  Francisco,  and  Los  Angeles.  Of  the  cases  from  the 
United  States,  47  percent  were  reported  in  the  last  6  months.  The  average 
number  of  cases  reported  per^day  has  gradually  increased  during  the  past  year 
from  approximately  2  per  day  to  7  per  day  presently  (Figure  2).  The  average 
age  of  AIDS  victims  is  35  years;  93  percent  are  men.  Death  has  been  reported 
in  at  least  743  (39X)  of  the  1,922  cases.  Of  the  598  patients  diagnosed  more 
than  1  year  ago,  almost  two-thirds  have  died. 

To  date,  reported  cases  fall  into  five  categories:  homosexual  or 
bisexual  men,  intravenous  drug  abusers,  persons  of  Haitian  origin,  persons 
with  hemophilia,  and  others.  Eighty-eight  percent  of  the  reported  cases  from 
the  United  States  are  homosexual  or  bisexual  men  or  abusers  of  intravenous 
(IV)  drugs  (Figure  3).  Of  the  patients  who  are  homosexual  or  bisexual  men,  12 
percent  have  a  history  of  IV  drug  abuse.  Of  patients  who  are  IV  drug  abusers, 
33  percent  are  also  homosexual  men.  A  much  smaller  number  of-  cases  has 
occurred  in  persons  of  Haitian  origin  who  now  live  in  this  country  (most  of 
whom  entered  the  U.S.  within  the  last  five  years)  and  in  persons  with 
hemophilia.  Because  sociocultural  differences  may  lead  to  problems  in 
obtaining  sensitive  information  from  Haitians  residing  in  the  United  States, 
the  apparent  lack  of  overlap  between  the  Haitian  and  other  groups  must  be 
interpreted  cautiously. 

The  6  percent  of  patients  who  have  not  been  placed  in  any  of  these  groups 
are  the  subject  of  intensive  investigations.  Included  in  this  group  are  19 
cases  who  are  sexual  partners  of  risk-group  members,  17  patients  who  received 
blood  transfusions  within  3  years  of  becoming  ill,  10  patients  who  have 


301 


Kaposi's  Sarcoma  but  normal  Immunologic  studies,  and  15  Individuals  on  whom 
conjplete  medical  histories  have  been  obtained  but  who  cannot  be  further 
classified  In  relation  to  known  high  risk  groups.  The  remaining  cases  have 
been  reported  In  Individuals  on  whom  complete  medical  histories  could  not  be 
obtained. 

The  federal  response  to  AIDS  began  In  June  1981  with  the  Investigation 
and  subsequent  publication  In  CDC's  Morbidity  and  Mortality  Weekly  Report 
(MMWR)  of  the  first  five  reported  cases  from  Los  Angeles.  Medical 
epidemiologists  were  immediately  dispatched  from  CDC  to  Investigate  additional 
cases  in  New  York  City  and  California.  These  Investigations  led  to  a  second 
MMWR  report  in  July  1981  clarifying  the  national  scope  of  the  problem.  The 
admission  of  the  first  AIDS  patient  to  the  Clinical  Center  at  the  National 
Institutes  of  Health  (NIH)  occurred  on  June  16,  1981.  Subsequently,  the  Food 
and  Drug  Administration  (FDA)  and  the  Alcohol,  Drug  Abuse,  and  Mental  Health 
Administration  (ADAMHA)  became  actively  involved  in  the  AILS  investigation. 
Because  of  the  extensive  multi-agency  involvement,  I  appointed  a  Public  Health 
Service  Executive  Committee  on  AIDS  to  formalize  coordination  of  the  response 
of  these  agencies  to  the  AIDS  problem. 
Public  Concerns 

Before  I  outline  the  activities  of  these  agencies,  I  shall  discuss 
briefly  several  concerns  which  have  been  raised  by  the  public. 

Because  there  are  gaps  in  our  understanding  of  AIDS  and  because  of  the 
complex  nature  of  AIDS  Investigations,  the  public  is  appropriately  concerned 
about  AIDS  and  the  Public  Health  Service's  response  to  this  problem. 
Therefore,  it  may  be  useful  to  review  some  of  the  specific  questions  that  have 
been  raised  by  the  public. 


26-097  O— 83 20 


302 


1.  How  Is  AIDS  transmitted? 

Based  on  the  best  available  Information,  we  believe  AIDS  Is 
transmitted  sexually,  particularly  among  homosexual  partners;  less 
frequently,  through  transfusion  of  blood  or  blood  products;  or  by  the 
misuse  of  needles.  We  have  no  evidence  that  the  disease  Is  spread 
through  air,  food,  water,  or  "casual"  contact.  To  the  contrary,  AIDS 
Is  a  difficult  disease  to  contract. 

2.  What  is  the  risk  of  acquiring  AIDS  through  a  blood  transfusion? 
At  present,  the  risk  of  acquiring  AIDS  through  blood  transfusion 
appears  to  be  extremely  small.  Although  as  many  as  10  million 
Americans  received  transfusions  during  the  3  years  of  the  AIDS 
epidemic,  CDC  Is  investigating  approximately  two  dozen  AIDS  cases  in 
which  transfusions  may  be  a  risk  factor.  We  believe  that  the  PHS 
recommendations  Issued  in  March  1983,  which  suggested  that  members  of 
groups  at  increased  risk  not  donate  blood,  will  decrease  the  current 

risk. 

3.  What  Is  the  cause  of  AIDS? 

Although  we  do  not  yet  know  the  cause  of  AIDS,  the  evidence  is  strong 
that  we  are  dealing  with  an  infectious  agent  with  a  long  Incubation 
period.  Public  Health  Service  laboratory  scientists  are  using  the 
most  sophisticated  methods  available  in  the  search  for  this  putative 
agent.  The  most  plausible  agents  are  viruses.  The  absence  of  illness 
In  animals  already  Inoculated  with  specimens  may  be  a  reflection  of 
the  long  Incubation  period  or  may  Indicate  that  the  "AIDS  agent" 
affects  only  humans.  Unfortunately,  it  Is  not  possible  to  predict 
when  the  cause  of  AIDS  will  be  found. 


303 


4.  Is  there  a  cure  for  AIDS? 

Treatment  is  available  for  Kaposi's  sarcoma  and  for  some  of  the 
Infections  which  affect  AIDS  victims.  However,  the  persistent  inmune 
defect  means  that  many  AIDS  patients  who  survive  one  of  the 
complications  of  the  disease  are  likely  to  succumb  to  another  of  Its 
manifestations.  We  aVe  hopeful  that  new  treatment  methods  designed 
to  improve  immune  function  will  result  in  improved  survival  or  even 
cure.  Though  a  cure  is  not  presently  available,  we  are  convinced  that 
steps  can  be  taken  to  prevent  the  acquisition  of  AIDS,  and  in  March 
1983  we  published  the  recommendations  in  the  MMWR. 

5.  How  does  the  government  guard  the  confidentiality  of  the  sensitive 
information  It  collects  on  AIDS  patients? 

All  collected  information  used  to  identify  an  individual  patient  is 
generally  protected  under  the  provisions  of  the  Privacy  Act.  CDC  has 
a  long  standing  position  of  protecting  patient  confidentiality;  a 
position  which  has  been  upheld  many  times  in  the  courts.  However, 
because  of  recent  concerns  expressed  In  the  press  and  by  some  State 
and  local  health  officials,  a  system  is  being  developed  by  CDC  whereby 
information  on  new  AIDS  cases  will  be  reported  to  CDC  with  all 
identifying  information  deleted  by  health  departments  and  the  case 
identified  by  a  code  number.  Patient  names  already  recorded  at  the 
CDC  will  be  deleted  and  replaced  by  a  code  number.  During  early 
August  all  States  will  be  informed  of  this  reporting  system.  Calls  on 
our  new  hotline  are  treated  confidentially.  No  individually 
identifiable  record  of  the  call  is  made. 


304 


6.  How  much  is  the  Public  HeaUh  Service  spending  on  AIDS  research? 
The  Public  Health  Service  spent  $5.5  million  on  AIDS  in  fiscal  year 
1982,  and  will  spend  $14.5  million  in  fiscal  year  1983.  In  addition, 
the  recently  signed  supplemental  appropriations  bill  provides  an 
additional  $12  million  for  obligation  in  fiscal  year  1983  and  fiscal 
year  1984  for  AIDS  activities.  We  are  reassessing  continually  the 
resources  necessary  to  respond  to  this  problem  in  fiscal  year  1984  as 
new  information  becomes  available.  Because  AIDS  is  the  top  emergency 
health  priority  of  the  Department,  funds  have  been  and  will  continue 
to  be  redirected,  as  needed,  within  PHS  agency  budgets  to  respond  to 
this  problem. 
To  address  these  and  other  public  concerns,  the  Public  Health  Service  has 
established  a  national  AIDS-hotline,  and  has  made  a  fact  sheet  and  bi-weekly 
information  package  available  to  the  public.  We  are  distributing  over  12,000 
individual  copies  of  the  material  monthly.  In  addition,  interested  groups  are 
reprinting  and  distributing  the  material.  In  a  presentation  July  27,  1983, 
Secretary  Heckler  announced  the  expansion  of  the  nationwide  AIDS  hotline  from 
three  to  eight  lines.  Information  will  be  available  on  a  24-hour  basis. 
Currently  8,000-10,000  calls  are  received  per  day.  On  May  24,  1983,  I  issued 
a  press  release  to  clarify  the  hazard  of  AIDS  and  the  status  of  Public  Health 
Service  efforts  in  combating  the  AIDS  problem.  We  have  issued  press  releases 
on  all  PHS  AIDS  activities  as  they  occur.  As  evidence  of  her  concern  and 
compassion.  Secretary  Heckler  has  visited  with  AIDS  patients  at  the  NIH 
Clinical  Center  and  has  written  to  all  Department  employees  asking  them  to 


305 


continue  to  donate  blood.  This  was  done  to  demonstrate  the  Importance  of 
Aialntaining  an  adequate  blood  supply  and  to  dispel  rumors  that  there  is  a  risk 
of  getting  AIDS  when  donating  blood.  We  are  also  working  with  Union  groups  to 
produce  educational  materials  aimed  at  specific  groups  -  health  care  workers, 
paramedics,  correctional  personnel,  morticians  and  others. 

I  shall  now  present  the  PHS  operational  plan  which  we  have  followed  in 
attempting  to  solve  the  AIDS  problem. 
Centers  for  Disease  Control  (CDC) 

The  activities  of  the  CDC  fall  into  four  major  areas:  surveillance, 
epidemiologic  studies,  laboratory  investigations,  and  dissemination  of 
information. 

The  goal  of  surveillance  is  to  describe  accurately  the  scope  of  the  AIDS 
epidemic  by  time,  place,  and  person,  and  requires  the  use  of  a  standard  case 
definition  and  report  form.  The  CDC  surveillance  system  is  largely  based  on 
the  voluntary  submission  of  case  reports  from  State  and  local  health 
departments  and  individual  physicians.  Additional  cases  are  obtained  through 
reviews  of  requests  for  pentamidine,  a  drug  used  to  treat  Pneumocystis 
pneumonia  and  only  available  through  the  CDC.  The  case  reports  from  these 
sources  are  the  basis  of  all  national  AIDS  statistics.  Within  the  past  6 
months,  surveillance  has  been  strengthened  by  a  CDC  funded  cooperative 
agreement  in  New  York  City  and  by  the  assignment  of  federal  public  health 
advisors  to  assist  health  departments  in  New  York  City,  Miami,  Los  Angeles, 
and  San  Francisco.  The  CDC  is  working  closely  with  the  Conference  of  State 
and  Territorial  Epidemiologists  to  improve  the  surveillance  of  AIDS 
nationwide.  As  of  July  15,  1983,  16  States  have  mandated  reporting  of  AIDS 
cases,  and  an  additional  22  have  officially  proposed  such  a  requirement.  In 


306 


addition,  a  special  surveniance  project  to  determine  the  incidence  of  AIDS  in 
hemophilia  patients  was  completed  in  collaboration  with  the  National 
Hemophilia  Foundation. 

Using  epidemiologic  studies,  the  CDC  has  sought  to  determine  risk  factors 
and  modes  of  transmission  for  AIDS.  A  national  case-control  study  of  AIDS  in 
homosexual  men  was  conducted  in  the  fall  of  1981.  This  study  established  that 
homosexual  men  with  large  numbers  of  sexual  partners  are  at  increased  risk  for 
AIDS.  Further  evidence  of  sexual  transmission  was  found  in  1982  from  the 
investigation  of  a  cluster  of  homosexual  male  AIDS  patients  who  were  linked  by 
sexual  contact.  Other  investigations  in  1982  found  evidence  for  AIDS  in 
individuals  with  hemophilia  who  had  received  clotting  factor  concentrates  and, 
possibly,  additional  persons  who  had  received  other  blood  products. 
Investigations  now  being  implemented  include  a  study  of  risk  factors  for  AIDS 
in  Haitians  living  in  Miami  and  New  York  City,  a  study  of  a  cohort  of  almost 
7,000  homosexual  men  in  San  Francisco,  and  a  study  of  the  risk  of  AIDS  in 
health  care  workers.  AIDS  patients  not  belonging  to  known  risk  groups 
continue  to  be  investigated  as  they  are  reported. 

Laboratory  work  at  the  CDC  has  been  in  the  areas  of  irranunology  and 
infectious  diseases.  Through  collaboration  with  scientists  inside  and  outside 
the  Public  Health  Service,  CDC  investigators  have  helped  characterize  the 
specific  immune  defect  caused  by  AIDS  and  have  studied  the  immune  status  of 
apparently  healthy  homosexual  men  and  patients  with  hemophilia.  In  our  search 
for  the  causative  agent  of  AIDS,  we  have  used  advanced  techniques  of  virology 
and  molecular  biology.  CDC  scientists  are  collaborating  with  investigators  at 


307 


the  National  Cancer  Institute  and  the  Harvard  School  of  Public  Health  to 
examine  the  possible  role  of  a  retrovirus,  identical  or  similar  to  the  human 
T-cell  leukemia  virus,  in  causing  AIDS.  Animal  studies  into  the  cause  of  AIDS 
are  in  progress. 

The  CDC  has  disseminated  timely  information  to  medical  and  public  health 
personnel  and  the  general  public  about  the  AIDS  problem.  Between  June  1981 
and  July  1983,  21  AIDS-related  articles  have  appeared  in  the  CDC  Morbidity  and 
Mortality  Weekly  Report  (MMWR).  Included  were  articles  on  general  prevention 
recommendations  (March  1983)  and  safety  precautions  for  health  care  workers 
(November  1982).  These  MMWR  articles  on  AIDS  have  regularly  been  described  by 
the  print  and  electronic  media  to  the  general  public.  CDC  investigators  have 
also  published  articles  in  scientific  journals,  spoken  at  medical  and 
scientific  meetings  and  public  forums,  and  been  available  to  the  media. 

CDC  4s  in  frequent  daily  contact  with  local  and  State  health  officials, 
representatives  of  concerned  groups  and  health  professionals. 
National  Institutes  of  Health  (NIH) 

The  NIH  is  supporting  a  wide  range  of  AIDS  research  by  its  own  scientists 
and  by  university  and  private  investigators.  Collaborative  as  well  as 
independent  research  efforts  have  been  undertaken  both  intramural ly  and 
extramurally  by  the  National  Cancer  Institute  (NCI),  National  Institute  of 
Allergy  and  Infectious  Diseases  (NIAID),  National  Heart,  Lung,  and  Blood 
Institute  (NHLBI),  National  Institute  of  Neurological  and  Communicative 
Disorders  and  Stroke  (NINCDS),  departments  of  the  NIH  Clinical  Center,  and 
other  components  of  the  NIH. 


308 


NIH  Intramural  scientists  have  been  involved  collaboratively  in  treating 
patients  at  the  Clinical  Center  since  1981.  Thus  far,  69  AIDS  patients  have 
been  treated  at  the  hospital,  of  whom  15  have  died.  Currently  54  patients  are 
under  treatment,  12  of  these  are  inpatients.  The  other  42  cases  are  being 
treated  as  outpatients,  or  as  inpatients  whose  stay  may  be  only  1  to  2  days  in 
length. 

Extramural  activities  have  included  the  issuance  of  two  Requests  for 
Applications  (RFAs)  jointly  sponsored  or  funded  by  the  NCI  and  the  NIAID.  The 
most  recent  of  these  RFAs  was  issued  in  May  1983,  with  an  application  deadline 
of  August  1  and  awards  to  be  made  early  in  fiscal  year  1984. 

The  purpose  of  this  recent  RFA,  entitled  "Infectious  Etiology  of  Acquired 
Immune  Deficiency  Syndrome  (AIDS)  and  Kaposi's  Sarcoma,"  is  to  encourage 
studies  on  the  search  for  the  isolation  and  the  characterization  of  the 
biological  agent(s)  which  may  be  the  primary  causative  factor{s)  in  AIDS  and 
Kaposi's  sarcoma. 

■  Examples  of  the  types  of  studies  that  might  be  appropriate  include: 

-  Direct  in  vivo  and  in  vitro  efforts  at  isolation,  identification,  and 
characterization  of  the  causative  biological  agent; 

-  Analysis  of  human  tissue  with  appropriate  tests  indicative  of  the 
presence,  state  of  integration,  and  location  of  viral  or  pro-viral 
DNA,  or  some  other  infectious  forms; 

-  Recognition  and  identification  of  marker  antigens  of  pathognomonic 
significance; 

-  Cytogenetic  analysis  for  chromosomal  changes  that  relate  to  disease 
induction;  and 

-  In  vitro  search  for  direct  morphological  transformation  and/or 
cytopathology  of  appropriate  target  cells. 


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NatlonaT  Institute  of  Allergy  and  Infectious  Diseases  (NIAID) 
Intramural  Research 

There  are  more  than  30  Individual  research  projects  within  the  Intramural 
laboratories  of  NIAID  which  directly  relate  to  AIDS.  These  Involve  studies  on 
the  nature  of  the  Immune  deficiency,  development  of  methods  for  early 
detection  of  disease.  Isolation  of  possible  etiologic  agents,  and  attempts  to 
transmit  the  disease  to  nonhuman  primates  and  therapeutic  trials. 

Research  on  therapeutic  procedures  Includes  trials  of  Immune  Interferon 
and  Interleukin  2  for  their  effectiveness  In  treating  AIDS.  In  addition, 
studies  are  underway  for  the  use  of  bone  marrow  transplants  for  the 
reconstltutlon  of  the  cellular  Inmune  system  of  AIDS  patients.  Several 
studies  are  aimed  at  understanding  the  nature  of  the  Immune  dysfunction, 
including  investigations  on  the  activation  and  Immunoregulation  of  B 
lymphocyte  function  and  characterization  of  the  nature  of  the  defect  in 
purified  populations  of  T4  lymphocytes.  The  latter  project  also  involves 
attempts  to  clone  helper  T-cells  and  isolate  the  agent  Involved  In  AIDS. 
Studies  are  also  in  progress  of  the  alterations  In  the  reticuloendothelial 
system.  The  process  and  nature  of  immune  complexes  in  AIDS  patients  are  under 
investigation.  Plasma  from  AIDS  patients  is  being  studied  for  Its  effect  on 
various  cell  functions. 

Projects  related  to  the  development  of  early  detection  methods  include 
the  serologic  evaluation  of  blood  from  patients  for  the  detection  of  Beta-2 
microglobulins  and  studies  to  determine  If  B  cell  activation  is  a  marker  of 
disease. 

Many  intramural  projects  Involve  attempts  to  identify  a  possible 
etiologic  agent  for  AIDS.  Studies  are  underway  using  various  DNA 


310 


hybridization.  Isolation  and  serologic  techniques  to  Identify  microbial 
agents.  Emphasis  is  being  placed  on  various  agents  including  retroviruses, 
adenoviruses,  cytomegalovirus,  Epstein-Barr  virus,  various  parvoviruses, 
rickettsia  and  chlamydia.  In  addition,  a  search  Is  being  made  for  the 
presence  of  slow  viruses  in  brains  of  AIDS  patients  who  develop  dementia. 
Attempts  are  being  made  to  transmit  AIDS  to  nonhuman  primates;  in  addition, 
the  imnunologic  changes  seen  in  primates  following  injection  of  AIDS 
infectious  tissues  and  blood  are  being  studied. 

The  NIAID  Intramural  Program  has  recently  awarded  a  contract  to  the  New 
York  Blood  Center  to  obtain  specimens  of  blood,  semen,  feces,  and  saliva  from 
several  groups  of  individuals  considered  at  high  risk  of  acquiring  AIDS, 
These  specimens  will  be  obtained  regularly  and  stored.  If  AIDS  develops  in 
any  of  the  study  participants,  these  specimens  will  provide  valuable  material 
for  many  of  the  projects  concerned  with  determining  the  etiologic  agent, 
developing  detection  methods,  and  studying  modes  of  disease  transmission. 
These  specimens  will  be  particularly  valuable  as  they  will  have  been 
collected  at  the  time  the  AIDS  infection  was  first  transmitted,  a  time  which 
may  precede  diagnosis  by  months  or  even  years. 
Extramural  Programs 

Four  applications  have  been  funded  in  response  to  the  National  Cancer 
Institute  (NCI)  Request  for  Application  (RFA)  on  AIDS  research  that  was  Issued 
in  August  1982.  The  NIAID  Advisory  Council  was  polled  by  telephone  several 
weeks  prior  to  the  May  1983  meeting  in  order  to  expedite  the  funding  of  these 
applications.  The  applications  include  studies  on  the  following: 

-  potential  drug  treatments  for  Pneumocystis  car in 11  pneumonia  in  an 
animal  model; 


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-  the  prevalence  and  transmission  of  cryptosporidiosis,  a  recently 
identified  parasitic  disease  that  can  cause  severe  and  potentially 
fatal  diarrhea  in  the  immunosuppressed  patients; 

-  the  development  of  opportunistic  infections  in  infants  born  to  mothers 
who  were  sexual  partners  of  AIDS  patients;  possible  routes  of 
transmission  of  AIDS 'among  contacts  of  adult  heterosexual  patients;  and 

-  evaluation  of  chemotherapeutic  and  naturally  occurring  substances  for 
the  treatment  and  prevention  of  AIDS,  as  well  as  the  study  of 
immunologic  defects  in  AIDS  patients  and  the  possible  relationship  of 
cytomegalovirus  to  the  cause  of  AIDS. 

Other  funds  support  research  project  grants  not  submitted  in  response  to 
the  RFA,  including  the  effects  of  cytomegalovirus  on  cell-mediated  immunity, 
plus  AIDS  projects  at  ongoing  NIAID  Sexually  Transmitted  Disease  Centers  and 
Centers  for  Interdisciplinary  Research  on  Immunologic  Diseases  which  include: 
a  study  to  define  the  interrelationship  between  the  "AIDS  prodrome  wasting 
syndrome"  and  fully  developed  AIDS  in  case  control  and  cohort  studies;  a  study 
of  life  style  and  other  factors  influencing  occurrence  of  AIDS  in  homosexual ly 
active  young  males,  including  association  of  sexual  practices  with  altered 
helper/suppressor  T-cell  ratios;  and  a  study  analyzing  T-lymphocytes  of  AIDS 
patients  by  molecular  hybridization  with  specific  DNA  probes  in  order  to 
detect  and  quantitate  the  number  of  genome  copies  of  cytomegalovirus  and 
herpes  simplex  virus  type  II  DNA  in  these  lymphocytes. 

On  May  9,  1983,  NIAID  issued  a  Request  for  Proposal  (RFP)  ("Study  of  the 
Natural  History  of  Acquired  Immune  Deficiency  Syndrome  (AIDS)  in  Homosexual 
Men")  which  will  support  a  prospective  study  with  the  following  specific 
objectives: 


312 


—  To  prospectively  observe  and  study  the  natural  history  of  the  disease 
in  enough  persons  in  high  risK  groups  who  are  not  known  to  be  infected 
at  the  outset  to  yield  a  number  of  cases  of  AIDS  sufficient  for 
meaningful  estimates  of  risk; 

—  To  build  a  repository,  as  a  national  resource  for  specimens  and  data 
from  men  to  traverse  the  entire  course  from  well  to  ill;  it  would 
permit  testing  of  hypotheses  about  etiologic  factors;  and 

—  To  complement  similar  smaller,  but  less  well  standardized,  follow-up 
studies  performed  in  different  places  and  times. 

Twenty-five  proposals  in  response  to  the  RFP  were  received  by  July  8, 
1983.  All  were  reviewed,  and  at  least  four  of  these  proposals  are  expected  to 
be  funded  by  the  end  of  October  1983. 
National  Cancer  Institute  (NCI) 
Intramural  Research 

NCI  intramural  activities' related  to  AIDS  can  be  divided  into  research 
which  is  concerned  with  AIDS  and  peripheral  research  which  examines  the  immune 
system  from  a  broader  perspective.  Both  human  studies  and  animal  models  are 
needed  in  this  endeavor.  Intramural  research  which  is  directly  related  to 
human  AIDS  is  divided  into  clinical  and  laboratory  efforts. 

Clinical  Efforts 

-  AIDS  patients  who  have  developed  Kaposi's  sarcoma  are  being  treated 
through  a  variety  of  approaches  in  the  NCI's  Clinical  Oncology  Program. 

-  Treatment  protocols  of  Kaposi's  sarcoma  are  composed  of  chemotherapy 
regimens  which  involve  combinations  of  cytotoxic  drugs. 

-  Kaposi's  sarcoma  skin  lesions  -  a  prominent  feature  of  the  disease  - 
are  being  treated  through  radiotherapy  procedures  which  involve  Phase 


313 


I  and  II  trials  of  total  skin  electron  beam  therapy. 

-  Experimental  treatment  of  Kaposi's  sarcoma  is  being  attempted  with 
human  lymphoblastoid  interferon  -  a  substance  that  may  reduce  tumors 
while  not  further  depressing  the  patient's  immune  system. 

-  In  an  effort  to  restore  the  patient's  diminished  immune  system,  the 
NCI  is  attempting  to ''use  purified  human  T-cell  growth  factor 
(interleukin  2)  with  AIDS  patients. 

Laboratory  Efforts 

-  A  major  focus  of  the  NCI's  efforts  is  to  determine  the  possible 
causative  role  of  human  T-cell  leukemia  virus  (HTLV)  in  AIDS.  Active 
projects  involve  cellular  biology,  immunology,  and  molecular  cloning 
of  the  many  viral  isolates  obtained  thus  far. 

-  Mechanisms  of  the  immune  dysfunction  found  in  AIDS  are  being  studied 
at  the  genetic,  viral,  and  pharmacologic  levels;  HTLV  appears  to  be 
the  only  known  infectious  agent  which  is  detected  at  a  high  degree  of 
frequency  in  AIDS  patients,  and  a  lesser  degree  in  lymphadenopathy 
syndrome,  and  at  a  very  low  frequency  in  matched  control  homosexual 
populations. 

Other 

-  NCI  epidemiologists  are  conducting  epidemiological  studies  of 
immunological  profiles  of  healthy  homosexual  men  and  profiles  of 
hemophiliacs  with  symptoms,  as  well  as  individuals  with  AIDS  or 
members  of  population  groups  at  risk  of  developing  AIDS.  NCI  staff 
have  studied  individuals  at  risk  in  New  York,  Washington,  D.C.,  and  in 

Denmark.  An  analysis  of  the  epidemiology  of  HTLV  incidence  in  Japan 
and  the  Caribbean  is  being  correlated  with  the  distribution  of  HTLV  in 
lymphodenopathy  and  AIDS  patients. 


314 


Intramural  AIDS  Task  Force 

Because  of  the  unique  expertise  In  HTLV  within  the  NCI,  the  Institute 
established  an  in-house  task  force  composed  of  a  basic  science,  clinical, 
and  extramural  staff.  The  intramural  task  force  is  responsible  for 
coordinating  research  efforts  within  the  NCI  and  for  maintaining  close 
collaboration  with  other  interested  national  and  international 
scientists.  Specific  collaboration  on  the  molecular  biology  of  HTLV 
involving  nucleic  acid  and  protein  sequencing  and  synthesis  is  going  on. 
Recently  the  task  force  has  expanded  its  efforts  to  include  the  Frederick 
Cancer  Research  Facility  (FCRF),  research  and  support  contracts.  These 
units  have  the  unique  ability  and  expertise  in  virus  and  lymphokine 
production  as  well  as  a  ready  scale-up  capacity. 
ExtramuraJ  Programs 

The  NCI  has  called  upon  a  variety  of  resources  in  an  effort  to  respond 
quickly  to  AIDS.  Mechanisms  of  response  and  support  include  grant, 
cooperative  agreement  and  contract  awards,  the  development  of  specialized 
Requests  for  Applications  (RFAs),  special  workshops,  the  establishment  of  an 
extramural  working  group,  and  presentations  to  and  discussions  with  the  NCI's 
advisory  bodies,  i.e..  Boards  of  Scientific  Advisors  and  the  National  Cancer 
Advisory  Board  (NCAB). 

Workshops  and  Presentations 

-  In  September  of  1981,  shortly  after  the  CDC  first  learned  about  AIDS, 
the  NCI  sponsored  a  workshop  on  AIDS.  NCI-supported  scientists  along 
with  NCI  staff  came  together  to  discuss  preliminary  research  leads  and 
discuss  a  coordinated  course  of  research  activities. 


315 


-  A  workshop  also  was  developed  for  the  NCI's  Division  of  Cancer 
Treatment's  Board  of  Scientific  Advisors. 

-  The  NCI  alerted  the  NCAB  to  the  growing  problem  of  AIDS  early  on  and 
has  discussed  its  research  directions  at  every  subsequent  board 
meeting.  Investigators  from  the  CDC  have  discussed  their  findings  with 
the  Board.  The  NCAB  is  closely  following  research  related  to  AIDS  and 
has  agreed  to  an  accelerated  review  process  for  AIDS  applications. 

-  Three  meetings  have  taken  place  recently.  One  of  these  brought 
together  all  the  cooperative  agreement  grantees.  Two  meetings  involved 
a  combination  of  NCI  AIDS  intramural  task  force  staff  and  outside 
federal  and  university  scientists  active  in  the  area  of  retrovirus  and 
AIDS. 

Extramural  Awards 

In  an' effort  to  respond  quickly  to  this  new  public  health  problem,  the 

NCI  awarded  supplemental  funding  in  September  1982  to  encourage  AIDS 

research. 

An  RFA  entitled  "Studies  of  Acquired  Immunodeficiency  Syndrome"  was 

developed,  and  cooperative  agreement  awards  have  been  and  continue  to  be 

made  as  a  result  of  this  announcement.  Studies  being  funded  include: 

•  Epidemiologic  studies  designed  to  identify  possible  etiologic 
factors  in  affected  patients  or  in  individuals  with  prodromal  conditions; 

•  Basic  research  projects  on  etiology  and  pathophysiology.  These 
include  studies  in  such  areas  as  immunology,  microbiology,  virology, 
toxicology,  etc.,  and  include  studies  of  AIDS,  Kaposi's  sarcoma,  and 
allied  conditions;  and 

•  Innovative  clinical  treatment  and  prevention  research  protocols 
which  are  linked  to  hypotheses  of  etiology. 


316 


-  -  To  date,  nine  cooperative  agreements  have  been  funded,  and  the  NCI  wiTl 

continue  to  fund  approved  applications  from  the  RFA.  The  review  process 

that  led  up  to  these  and  subsequent  awards  was  substantially  shortened  at 

all  stages,  with  the  NCAB  participating  in  a  mail  ballot  rather  than  wait 

for  a  regular  board  meeting. 

The  NCI  continues  to  encourage  investigator-initiated  grant  applications 

and  expedites  the  review  of  any  applications  related  to  AIDS  that  are 

received. 

Contracts  also  have  been  employed  to  help  in  the  AIDS  research  effort. 

In  general,  contracts  are  used  to  support  laboratory  and  epidemiologic 

studies. 

Extramural  Working  Group 

The  NCI  has  formed  an  extramural  working  group  which  consists  of  all 
NCI-funded  grantees  and  includes  NCI  and  other  NIH  staff  with  participation 
from  the  CDC.  This  group  meets  regularly  to  discuss  ongoing  research  and 
share  preliminary  findings.  This  mechanism  allows  for  a  fast  exchange  of 
information  among  investigators  and  obviates  the  need  to  wait  for  published 
results.  The  NCI  felt  this  type  of  information  exchange  would  be  essential 
for  a  continued  quick  response  to  this  public  health  emergency.  Members  of 
the  working  group  are  included  in  the  NCI's  intramural  task  force  enhance 
coordination  of  research  efforts. 
National  Heart,  Lung,  and  Blood  Institute  (NHLBI) 

NHLBI  is  primarily  involved  in  two  aspects  of  the  AIDS  problem:  (1)  in 
regard  to  its  responsibility  for  hemorrhagic  disorders,  such  as  the 
hemophilias,  NHLBI  is  concerned  with  the  care  and  treatment  of  these  patients 
with  blood  and  blood  products;  and  (2)  in  regard  to  blood  and  blood  products, 
the  Institute  has  a  major  concern  for  the  safety  of  these  products.  It  is 


317 


under  the  latter  rubric,  blood  safety,  that  efforts  to  identify  carriers  of 
AIDS  by  means  of  various  screening  tests  are  being  carried  out. 

Intramural  Research 

NHLBI  has  established  an  intra-agency  agreement  with  the  CDC  to 

investigate  possible  changes  in  the  immune  system  in  patients  with 

hemophilia,  sickle  cell  anemia,  and  Cooley's  anemia,  all  of  whom  receive 

numerous  infusions  of  blood  and  blood  products.  Approximately  200 

patients  from  New  York  are  being  studied. 

NHLBI  also  has  an  intra-agency  agreement  with  the  Clinical  Center,  NIH, 

which  will  attempt  to  transmit  AIDS  to  chimpanzees  using  plasma  obtained 

from  patients  with  AIDS.  If  AIDS  is  caused  by  a  transmissible  agent, 

using  material  from  active  cases  and  injecting  it  into  nonhuman  primates 

offers  a  good  chance  for  identifying  the  agent. 

NHLBI  sponsored  a  conference  on  the  association  of  blood  and 

blood-product  use  with  AIDS,  March  15,  1983.  The  conference  was  attended 

by  35  scientists,  clinicians,  and  administrators  to  develop  research 

recommendations  for  the  Institute. 

An  intramural  research  project  involves  study  of  the  immune  system  of 

sickle  cell  anemia  and  Cooley's  anemia  patients  who  receive  numerous 

infusions  of  blood.  Specific  components  on  the  surface  of  certain  white 

cells  are  being  investigated  as  possible  markers  for  changes  in  the 

immune  system  of  patients  with  AIDS. 

With  the  co-sponsorship  of  the  NCI  and  the  NIAID,  the  NHLBI  will  hold  a 

NIH  Research  Workshop  on  the  Epidemiology  of  AIDS  in  September  1983. 

This  meeting  will  focus  on  the  relationship  of  various  factors  that 

determine  the  frequency  and  distribution  of  AIDS  in  the  community. 


26-097  O— 83 21 


318 


A  meeting  of  the  Inter-Agency  Technical  Committee  on  Heart,  Blood  Vessel, 
Lung,  and  Blood  Diseases  and  Resources  focused  on  the  current  state  of 
knowledge  regarding  AIDS  was  held  on  May  4,  1983. 
Extramural  Programs 

On  July  15,  1983,  the  NHLBI  published  an  RFA  to  encourage  investigators 
to  develop  tests  that  can  be  used  to  rapidly,  simply,  and  specifically 
identify  carriers  of  AIDS.  Presently  there  is  no  laboratory  test  to 
identify  individuals  who  carry  the  disorder. 

The  NHLBI  will  soon  issue  an  RFP  to  solicit  contract  proposals  for  a 
large  scale  prospective  study  on  the  association  of  blood  and  blood 
products  to  AIDS.  The  RFP  will  be  issued  by  the  middle  of  August.  The 
work  conducted  under  the  contract  will:  (1)  examine  alterations  in 
iimune  function  among  patients  who  receive  many  blood  transfusions  to 
determine  whether  these  alterations  bear  any  relationship  to  the 
development  of  AIDS;  (2)  compare  post-transfusion  changes  among 
populations  receiving  many  blood  transfusions  (patients  with  sickle  cell 
anemia.  Thalassemia,  and  those  undergoing  treatment  for  trauma)  with  the 
incidence  of  the  alterations  among  control  groups;  and  (3)  establish  a 
blood  serum  and  blood  cell  repository  that  can  be  used  in  future  research 
efforts  in  AIDS. 

NHLBI  is  supporting  a  research  project  grant  to  study,  prospectively, 
changes  in  the  immune  system  in  patients  with  hemophilia.  This  project 
will  provide  useful  information  concerning  the  natural  history  of  immune 
disturbances  observed  in  hemophiliacs. 

Researchers  in  two  program  project  grants  are  studying  the  possible  link 
between  blood  product  use  and  AIDS.  These  studies  focus  on  genetic  and 
inmunologic  factors  that  may  contribute  to  the  development  of  AIDS. 


319 


NationaT  Institute  of  Neurological  and  Communicative  Disorders  and  Stroke 
(NINCDS) 

The  NINCDS  is  involved  in  a  number  of  intramural  projects,  including 
investigations  on  the  interaction  between  viruses  and  the  host  imnune  system 
to  examine  mechanisms  of  protection  as  well  as  disease  production  in  the  case 
of  acute  or  chronic  infections  of  the  cerebral  nervous  system.  The  NINCDS  is 
also  involved  in  a  collaborative  effort  with  the  California  Primate  Center  to 
study  Simian  Acquired  Immune  Deficiency  Syndrome  (SAIDS),  a  disease  in  Macaque 
monkeys  similar  to  humans.  This  disease  has  been  transmitted  in  the 
laboratory,  but  the  etiological  agent  has  not  been  identified.  In  addition. 
Institute  staff  are  seeing  patients  admitted  by  the  NCI  and  the  NIAID  at  the 
NIH  to  study  the  deterioration  of  neurological  functions  in  patients  with  AIDS. 
Food  and  Drug  Administration  (FDA) 

FDA's  efforts  have  been  focused  in  two  areas:  1)  the  safety  of  blood  and 
blood  products  with  regard  to  infectious  agents  transmissible  through  these 
products;  and  2)  research  directed  toward  elucidating  the  etiology  of  AIDS. 
With  respect  to  the  first  of  these  efforts,  the  work  of  the  FDA  has  centered 
on  issues  of  blood  collection,  processing,  and  use  while  coordinating  with 
various  blood  service  organizations.  FDA  has  issued  guidelines  to  blood 
collection  centers  on  the  prevention  of  AIDS  through  the  screening  of  donors 
at  increased  risk.  FDA  is  also  working  with  blood  product  manufacturers  in  an 
evaluation  of  methods  which  might  be  applied  to  clotting  factor  concentrates 
to  increase  the  safety  of  their  use.  In  collaboration  with  scientists  at  the 
CDC,  200  separate  lots  of  clotting  factor  concentrates  prepared  by  the  four 
major  U.S.  manufacturers  were  assayed  for  virus  contamination.  The  results  of 
these  studies  were  negative. 


320 


Research  has  also  been  performed  in  the  FDA  regarding  the  etiology, 
pathogenesis  and  treatment  of  AIDS.  Studies  pertaining  to  the  etiology  of 
AIDS  have  been  directed  towards  studying  the  significance  of  herpes  viruses  in 
these  patients.  Through  these  studies  it  has  been  found  that  two  herpes 
viruses,  cytomegalovirus  and  Epstein-Barr  virus,  are  extremely  common  in  AIDS 
patients  and  are  frequently  associated  with  Kaposi's  sarcoma.  These  results 
are  the  basis  for  current  efforts  to  determine  whether  the  associations  are  in 
any  way  indicative  of  an  etiological  role  for  one  or  both  of  these  viruses. 

Studies  of  the  pathogenesis  of  AIDS  have  been  designed  to  determine  what 
the  abnormality  of  the  immune  system  is  that  causes  patients  to  be  susceptible 
to  opportunistic  infections.  These  studies  have  demonstrated  that  AIDS 
patients  are  susceptible  to  opportunistic  infections,  at  least  in  part  if  not 
totally,  as  a  result  of  an  arrest  in  maturation  of  immune  cells.  This  defect 
can  be  corrected  vn   vitro  by  treating  cells  from  AIDS  patients  with  a 
lymphokine,  interleukin  2.  The  cause  of  this  maturation  arrest  is  under 
investigation. 

Studies  of  treatment  of  AIDS  patients  have  involved  close  collaboration 
in  clinical  studies  being  performed  at  the  NIH.  The  FDA  has  done  substantial 
testing  to  evaluate  the  effects  of  experimental  treatments  on  the  immune 
systems  of  the  patients. 

The  future  directions  of  these  research  programs  will  be  to  continue  to 
pursue  the  leads  that  have  been  developed  in  each  of  these  studies.  These 
studies  will  be  extended  to  individuals  in  high  risk  groups.  In  addition,  as 
clues  are  developed  from  basic  research  on  the  etiology  and  immunology, 
laboratory  tests  which  detect  abnormalities  which  are  specific  for  AIDS  will 
be  pursued  as  possible  screening  tests.  Plans  are  under  development  now  to 
begin  experimental  application  of  one  such  test. 


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FDA  has  made  a  special  effort  to  maintain  a  broad  dialogue  with  the 
sc1e"nt1f1c  and  manufacturing  community  and  with  the  various  organizations  of 
the  blood  service  complex.  To  this  end  a  series  of  workshops  have  been  held 
Involving  the  Blood  and  Blood  Products  Advisory  Committee,  the  Office  of 
Biologies  staff,  outside  expe^t  consultants,  the  manufacturers,  and 
representatives  of  the  American  National  Red  Cross,  the  Council  of  Community 
Blood  Centers,  the  American  Association  of  Blood  Banks,  the  American  Blood 
Resources  Association,  and  the  National  Hemophilia  Foundation. 

At  Its  July  19  meeting,  FDA's  Blood  Products  Advisory  Committee  discussed 
the  safety  of  plasma  derivatives.  This  is  of  concern  because  hemophiliac 
patients  require  treatment  with  a  product,  antihemophiliac  factor  (AHF), 
derived  from  plasma  which  is  pooled  from  thousands  of  donors.  However,  I 
would  emphasize  that  the  risk  of  transmitting  AIDS  to  an  individual 
hemophiliac  from  a  special  lot  of  AHF  is  very  small,  if  it  exists  at  all.  The 
Committee  recommended  that  no  regulatory  requirements  regarding  the  recall  or 
destruction  of  lots  of  AHF,  which  may  contain  plasma  from  an  AIDS  donor,  be 
developed  but  that  any  cases  that  are  identified  be  examined  individually.  In 
reaching  such  a  conclusion,  a  number  of  variables  must  be  considered  such  as: 
the  degree  of  specificity  of  the  diagnosis,  the  time  of  onset  of  symptoms  in 
relation  to  the  time  of  donation,  the  potential  effect  upon  the  immediate 
supply  of  AHF  and  the  long-term  production  of  this  essential  plasma 
derivative.  Let  me  emphasize  that  the  health  of  the